Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 Carmell - It was great talking to you the other day - Glad to hear that our " wagon-puller " is bouncing back quickly - What a hero he is! Chat soon, and see you in May - I've managed to persuade that flying will be so much less stressful for us all, so we won't be driving down in May - Whoa- hoo!! Hugs Jacki > > Hi all, > > Finally, an update on Braydon's surgery March 13. > Braydon had surgery to exchange/replace both VEPTR > devices (he has a lumbar hybrid and a chestwall > device). The surgery went great! Besides replacing > the devices, they did a lot of correction. His chest > is fuller and his shoulders and hips are well-balanced > again. They had to chip away some of the bone on the > lumbar attachment (because bone tissue had grown over > the attachment site). With the bone chipping and the > big correction, he was in more pain than a typical > expansion. It took two days to get his pain under > control (Dilaudid PCA pump, Valium, Toradol) but by > Wednesday morning, he turned the corner and hasn't > looked back. He was released on Thursday. He's still > sore and trying to relax his muscles, but he's been > sleeping well (sleeping in the reclining sofa). > Sleeping well is a good thing! He'll probably go to > school for half-days starting Wednesday. We'll just > take it one day at a time. > > Thanks to all for your well-wishes and thoughts and > prayers. It means so much to know so many people love > and care about us. We appreciate it more than you > know. > > Our best, > Carmell and Braydon and family > > mom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon 10, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 Congratulations Braydon and Carmell for jumping yet another hurdle. It sounds like we may not even recognize Braydon if we get to see you in April. I will tell Bridget that Braydon will look muscly like the athletes in the Commonwealth Games. , That is such great news for you and Kylie. Wow!!! Congratulations. We should still be there when you come back to Shriners as we are going to be there in the week leading up to Easter. I think it's the 9th April for a couple of days depending if they want to put Bridge back in a cast or adjust her brace . We are really looking forward to seeing you. We will be keeping the prayers up for all. Love BertCarmell Burns <cjbmom23@...> wrote: Hi all,Finally, an update on Braydon's surgery March 13. Braydon had surgery to exchange/replace both VEPTRdevices (he has a lumbar hybrid and a chestwalldevice). The surgery went great! Besides replacingthe devices, they did a lot of correction. His chestis fuller and his shoulders and hips are well-balancedagain. They had to chip away some of the bone on thelumbar attachment (because bone tissue had grown overthe attachment site). With the bone chipping and thebig correction, he was in more pain than a typicalexpansion. It took two days to get his pain undercontrol (Dilaudid PCA pump, Valium, Toradol) but byWednesday morning, he turned the corner and hasn'tlooked back. He was released on Thursday. He's stillsore and trying to relax his muscles, but he's beensleeping well (sleeping in the reclining sofa). Sleeping well is a good thing! He'll probably go toschool for half-days starting Wednesday. We'll justtake it one day at a time.Thanks to all for your well-wishes and thoughts andprayers. It means so much to know so many people loveand care about us. We appreciate it more than youknow.Our best,Carmell and Braydon and familymom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon 10, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 This is great news! I am glad the surgery went well and that his pain is under better control now. He sounds like a really tough little guy! Noelle (12-2-01)Ian (8-15-04) Braydon update Hi all,Finally, an update on Braydon's surgery March 13. Braydon had surgery to exchange/replace both VEPTRdevices (he has a lumbar hybrid and a chestwalldevice). The surgery went great! Besides replacingthe devices, they did a lot of correction. His chestis fuller and his shoulders and hips are well-balancedagain. They had to chip away some of the bone on thelumbar attachment (because bone tissue had grown overthe attachment site). With the bone chipping and thebig correction, he was in more pain than a typicalexpansion. It took two days to get his pain undercontrol (Dilaudid PCA pump, Valium, Toradol) but byWednesday morning, he turned the corner and hasn'tlooked back. He was released on Thursday. He's stillsore and trying to relax his muscles, but he's beensleeping well (sleeping in the reclining sofa). Sleeping well is a good thing! He'll probably go toschool for half-days starting Wednesday. We'll justtake it one day at a time.Thanks to all for your well-wishes and thoughts andprayers. It means so much to know so many people loveand care about us. We appreciate it more than youknow.Our best,Carmell and Braydon and familymom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon 10, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 Carmell, So glad to hear Braydon is doing better. told me you all were doing this. I'm glad to have the update!! I understand what you are talking about with the pain. Mo had to have bone shaved also. Her chest wall implant was havign bone growth too. They reanchored it higher and made it a hybrid. Post some pics of Braydon if you have the time. I would love to see how he looks. Mo is encouraged to see other kids like her looking "normal". :0) ShellieCarmell Burns <cjbmom23@...> wrote: Hi all,Finally, an update on Braydon's surgery March 13. Braydon had surgery to exchange/replace both VEPTRdevices (he has a lumbar hybrid and a chestwalldevice). The surgery went great! Besides replacingthe devices, they did a lot of correction. His chestis fuller and his shoulders and hips are well-balancedagain. They had to chip away some of the bone on thelumbar attachment (because bone tissue had grown overthe attachment site). With the bone chipping and thebig correction, he was in more pain than a typicalexpansion. It took two days to get his pain undercontrol (Dilaudid PCA pump, Valium, Toradol) but byWednesday morning, he turned the corner and hasn'tlooked back. He was released on Thursday. He's stillsore and trying to relax his muscles, but he's beensleeping well (sleeping in the reclining sofa). Sleeping well is a good thing! He'll probably go toschool for half-days starting Wednesday. We'll justtake it one day at a time.Thanks to all for your well-wishes and thoughts andprayers. It means so much to know so many people loveand care about us. We appreciate it more than youknow.Our best,Carmell and Braydon and familymom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon 10, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2006 Report Share Posted November 18, 2006 I am so sorry to hear that! I didn't even know that could happen. You and your entire family will be in our thoughts and prayers. Please keep us posted and let me know if there's anything I can do. Jen Carmell Burns <cjbmom23@...> wrote: Well, we met with the neurosurgeon today and he's 90% convinced Braydon has a re-tethered spinal cord. The MRI done last week shows fatty infiltration at the base of the cord, and the radiologist asked if he has ever been de-tethered at all. With the suspicious MRI and the symptoms he's been having, we've scheduled surgery for Dec. 13. UGH. One of the potential complications for Braydon is that his hybrid VEPTR is attached to the L1 vertebrae. His previous release surgery was done via the L3 vertebrae. The nsg will go up to L2 to try and release as much of the cord as possible. The problem might be in the area where the VEPTR is attached. They may not be able to reach as far up as they need to which means they wouldn't be able to do a complete release/de-tether. The nsg also said that the surgery may not completely resolve all the pain issues. We're hoping and praying it does. Carmell mom to Kara, idiopathic scoliosis, Blake 16, GERD and Braydon 11, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ __________________________________________________________ Sponsored Link Compare mortgage rates for today. Get up to 5 free quotes. Www2.nextag.com --------------------------------- Everyone is raving about the all-new beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2006 Report Share Posted November 18, 2006 Hi Carmell I am so sorry to hear about the re-tethering. Do you mind if I ask you some more questions about it? I know that Braydon's medical history is complicated, but my son also had a tight filum so I am very curious about the retethering. They just released the filum, correct? How and where has he retethered? What were the symptoms he was having? Did the nsg tell you this may happen? Owen has a swelling at his incision site that they think is leaking fluid. They aren't concerned about it but we are having an MRI in 2 weeks because I AM! His scoli isn't looking much better (Dr D'Astous decided not to cast him for various reasons) and I am worried about the cord. My thoughts are with you and your family. It looks like poor Braydon has had enough surgeries to last a few lifetimes. allison & owen --- <jenstewart73@...> wrote: > > I am so sorry to hear that! I didn't even know that > could happen. You and your entire family will be in > our thoughts and prayers. Please keep us posted and > let me know if there's anything I can do. > > Jen > Carmell Burns <cjbmom23@...> wrote: > Well, we met with the neurosurgeon today > and he's 90% > convinced Braydon has a re-tethered spinal cord. The > MRI done last week shows fatty infiltration at the > base of the cord, and the radiologist asked if he > has > ever been de-tethered at all. With the suspicious > MRI > and the symptoms he's been having, we've scheduled > surgery for Dec. 13. UGH. One of the potential > complications for Braydon is that his hybrid VEPTR > is > attached to the L1 vertebrae. His previous release > surgery was done via the L3 vertebrae. The nsg will > go up to L2 to try and release as much of the cord > as > possible. The problem might be in the area where the > VEPTR is attached. They may not be able to reach as > far up as they need to which means they wouldn't be > able to do a complete release/de-tether. The nsg > also > said that the surgery may not completely resolve all > the pain issues. We're hoping and praying it does. > > Carmell > > mom to Kara, idiopathic scoliosis, Blake 16, GERD > and Braydon 11, VACTERL, GERD, DGE, Titanium Rib > Project patient #137 (dbl implant 8/01), thoracic > insufficiency, rib anomalies, congenital scoliosis > (fusion surgery 5/96), missing coccyx, fatty > filum/TC (released 4/99), anal stenosis, chronic > constipation, horseshoe (cross-fused) kidney, dbl > ureter in left kidney, ureterocele (excized 6/95), > kidney reflux (reimplant surgery 1/97), neurogenic > bladder, bilateral hip dysplasia, right leg/foot > dyplasia, tibial torsion, clubfoot with 8 toes > (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, > single umblilical artery, tonsil-adnoidectomy and > ear tubes (3/98), etc. > http://carmellb-ivil.tripod.com/myfamily/ > > __________________________________________________________ > Sponsored Link > > Compare mortgage rates for today. > Get up to 5 free quotes. > Www2.nextag.com > > > > > > --------------------------------- > Everyone is raving about the all-new > beta. > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Sponsored Link Mortgage rates near 39yr lows. $510k for $1,698/mo. Calculate new payment! www.LowerMyBills.com/lre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2006 Report Share Posted November 18, 2006 Thanks Jen - I'll post when I know more information. Carmell --- <jenstewart73@...> wrote: > > I am so sorry to hear that! I didn't even know that > could happen. You and your entire family will be in > our thoughts and prayers. Please keep us posted and > let me know if there's anything I can do. > > Jen __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2006 Report Share Posted November 18, 2006 Hi , I'll be happy to answer your questions, based on our experiences. <<They just released the filum, correct?>> Yes. Braydon had a fatty filum release surgery. Braydon does not have any other spinal cord complications - no lipoma, no syrinx, nothing that would be an obvious problem. <<How and where has he retethered?>> His MRI last week showed " no change from previous scan " . However, there were two radiologists that looked at the scan, and the second radiologist (a neuro-radiologist) wrote in his comments, " has this patient had an initial release " ? I assume this means the MRI looks like a fatty filum tether, not a scar tissue build-up that happens post-release, like most scans show (does that make sense?). His cord ends in the normal spot (L1) but there is thick tissue that appears to be tethering his spinal cord. Braydon's TC issue is complicated by the VEPTR device that is attached to the L1 vertebrae. The neurosurgeon said the first surgery was done via the L3 site (laminectomy). This time they will go up to L2 and try to release the tethering as high up as they can, but that the VEPTR device might have created so much scar tissue that they can't reach as high as the tether is (again, does that make sense?). <<What were the symptoms he was having?>> Braydon's first symptom (looking back - hindsight is 20/20) was a change in his bladder habits. In September, his bowels seemed to be slowing down, even while on laxatives. In October he had his routine VEPTR expansion surgery. He has had some strange back pain since the surgery. His lower back (along his waistline) is constantly sore and achy. Sometimes he gets needle-type pain in his back. Sometimes his legs are weak or tingly. Hips, ribs, etc. are all sometimes an issue. Basically, they think that he was starting to show symptoms of a re-tether, then the VEPTR expansion speeded up the process by stretching the spine just that much too much. I believe he was starting to re-tether since he was going through a growth spurt. If a child is going to re-tether, it often happens during a growth spurt. Braydon's VEPTR surgery just magnified the problem. <<Did the nsg tell you this may happen?>> When Braydon had his first de-tether, our nsg said that they have seen many 2-3 kids with simple fatty filums that have re-tethered. The nsg also is a believer that TC release surgery either improves or prevents progression of scoliosis in most cases. Do you live in SLC? Who is the nsg treating Owen? Braydon's nsg is Dr. at PCMC in SLC. He is fabulous. If he isn't your nsg, maybe you could send the MRI that will be done in a couple weeks to him and a history and ask his opinion? I'd love to know more about Owen. Let me know if I can clarify anything else. <<It looks like poor Braydon has had enough surgeries to last a few lifetimes.>> Yes, but he doesn't mind. He has an amazing attitude about surgery and these things. I'm very proud of him. Carmell mom to Kara, idiopathic scoliosis, Blake 16, GERD and Braydon 11, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ ________________________________________________________________________________\ ____ Sponsored Link Mortgage rates near 39yr lows. $420k for $1,399/mo. Calculate new payment! www.LowerMyBills.com/lre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2006 Report Share Posted November 18, 2006 Wow. Like Jen said, I had no idea it could re-tether. I'm really sorry to hear that...he's such a trooper and he's been through so much already. We're sending big hugs his way! Noelle (12-2-01) Ian (8-15-04) Braydon update Well, we met with the neurosurgeon today and he's 90% convinced Braydon has a re-tethered spinal cord. The MRI done last week shows fatty infiltration at the base of the cord, and the radiologist asked if he has ever been de-tethered at all. With the suspicious MRI and the symptoms he's been having, we've scheduled surgery for Dec. 13. UGH. One of the potential complications for Braydon is that his hybrid VEPTR is attached to the L1 vertebrae. His previous release surgery was done via the L3 vertebrae. The nsg will go up to L2 to try and release as much of the cord as possible. The problem might be in the area where the VEPTR is attached. They may not be able to reach as far up as they need to which means they wouldn't be able to do a complete release/de-tether. The nsg also said that the surgery may not completely resolve all the pain issues. We're hoping and praying it does. Carmell mom to Kara, idiopathic scoliosis, Blake 16, GERD and Braydon 11, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ __________________________________________________________ Sponsored Link Compare mortgage rates for today. Get up to 5 free quotes. Www2.nextag.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2006 Report Share Posted November 18, 2006 Hi Carmell, That is such a bummer. Sorry to hear you are once again on uncertain ground. Terrible to think of Braydon being uncomfortable when i have a picture of him pulling Bridge and Siobhan in a wagon at at great speed in the SLC playroom 3 days after an expansion surgery. I hope and pray that the surgery is successful and offers him relief. We are thinking of you Bert Carmell Burns <cjbmom23@...> wrote: Hi , I'll be happy to answer your questions, based on our experiences. <<They just released the filum, correct?>> Yes. Braydon had a fatty filum release surgery. Braydon does not have any other spinal cord complications - no lipoma, no syrinx, nothing that would be an obvious problem. <<How and where has he retethered?>> His MRI last week showed " no change from previous scan " . However, there were two radiologists that looked at the scan, and the second radiologist (a neuro-radiologist) wrote in his comments, " has this patient had an initial release " ? I assume this means the MRI looks like a fatty filum tether, not a scar tissue build-up that happens post-release, like most scans show (does that make sense?). His cord ends in the normal spot (L1) but there is thick tissue that appears to be tethering his spinal cord. Braydon's TC issue is complicated by the VEPTR device that is attached to the L1 vertebrae. The neurosurgeon said the first surgery was done via the L3 site (laminectomy). This time they will go up to L2 and try to release the tethering as high up as they can, but that the VEPTR device might have created so much scar tissue that they can't reach as high as the tether is (again, does that make sense?). <<What were the symptoms he was having?>> Braydon's first symptom (looking back - hindsight is 20/20) was a change in his bladder habits. In September, his bowels seemed to be slowing down, even while on laxatives. In October he had his routine VEPTR expansion surgery. He has had some strange back pain since the surgery. His lower back (along his waistline) is constantly sore and achy. Sometimes he gets needle-type pain in his back. Sometimes his legs are weak or tingly. Hips, ribs, etc. are all sometimes an issue. Basically, they think that he was starting to show symptoms of a re-tether, then the VEPTR expansion speeded up the process by stretching the spine just that much too much. I believe he was starting to re-tether since he was going through a growth spurt. If a child is going to re-tether, it often happens during a growth spurt. Braydon's VEPTR surgery just magnified the problem. <<Did the nsg tell you this may happen?>> When Braydon had his first de-tether, our nsg said that they have seen many 2-3 kids with simple fatty filums that have re-tethered. The nsg also is a believer that TC release surgery either improves or prevents progression of scoliosis in most cases. Do you live in SLC? Who is the nsg treating Owen? Braydon's nsg is Dr. at PCMC in SLC. He is fabulous. If he isn't your nsg, maybe you could send the MRI that will be done in a couple weeks to him and a history and ask his opinion? I'd love to know more about Owen. Let me know if I can clarify anything else. <<It looks like poor Braydon has had enough surgeries to last a few lifetimes.>> Yes, but he doesn't mind. He has an amazing attitude about surgery and these things. I'm very proud of him. Carmell mom to Kara, idiopathic scoliosis, Blake 16, GERD and Braydon 11, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ __________________________________________________________ Sponsored Link Mortgage rates near 39yr lows. $420k for $1,399/mo. Calculate new payment! www.LowerMyBills.com/lre --------------------------------- Check out the all-new beta - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2006 Report Share Posted November 18, 2006 Carmell, We will be praying for Braydon. Let us know how things go. Shellie Carmell Burns <cjbmom23@...> wrote: Well, we met with the neurosurgeon today and he's 90% convinced Braydon has a re-tethered spinal cord. The MRI done last week shows fatty infiltration at the base of the cord, and the radiologist asked if he has ever been de-tethered at all. With the suspicious MRI and the symptoms he's been having, we've scheduled surgery for Dec. 13. UGH. One of the potential complications for Braydon is that his hybrid VEPTR is attached to the L1 vertebrae. His previous release surgery was done via the L3 vertebrae. The nsg will go up to L2 to try and release as much of the cord as possible. The problem might be in the area where the VEPTR is attached. They may not be able to reach as far up as they need to which means they wouldn't be able to do a complete release/de-tether. The nsg also said that the surgery may not completely resolve all the pain issues. We're hoping and praying it does. Carmell mom to Kara, idiopathic scoliosis, Blake 16, GERD and Braydon 11, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ __________________________________________________________ Sponsored Link Compare mortgage rates for today. Get up to 5 free quotes. Www2.nextag.com --------------------------------- Sponsored Link Degrees for working adults in as fast as 1 year. Bachelors, Masters, Associates. Top schools Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2006 Report Share Posted November 19, 2006 Carmell, I'm so sorry to hear that. I don't even know what to say! We will be thinking of him and your family. Hope everything turns out for the best. Terri Mattson Carmell Burns <cjbmom23@...> wrote: Well, we met with the neurosurgeon today and he's 90% convinced Braydon has a re-tethered spinal cord. The MRI done last week shows fatty infiltration at the base of the cord, and the radiologist asked if he has ever been de-tethered at all. With the suspicious MRI and the symptoms he's been having, we've scheduled surgery for Dec. 13. UGH. One of the potential complications for Braydon is that his hybrid VEPTR is attached to the L1 vertebrae. His previous release surgery was done via the L3 vertebrae. The nsg will go up to L2 to try and release as much of the cord as possible. The problem might be in the area where the VEPTR is attached. They may not be able to reach as far up as they need to which means they wouldn't be able to do a complete release/de-tether. The nsg also said that the surgery may not completely resolve all the pain issues. We're hoping and praying it does. Carmell mom to Kara, idiopathic scoliosis, Blake 16, GERD and Braydon 11, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ __________________________________________________________ Sponsored Link Compare mortgage rates for today. Get up to 5 free quotes. Www2.nextag.com --------------------------------- Sponsored Link $420,000 Mortgage for $1,399/month - Think You Pay Too Much For Your Mortgage? Find Out! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2006 Report Share Posted November 19, 2006 so sorry to hear this happened. our thoughts and prayers are with you! abigail and nadia --------------------------------- Check out the all-new beta - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2006 Report Share Posted November 20, 2006 hi carmell, i also wanted to post and say how sorry i am that braydon has to go through this again! especially with the added complication of having the veptr device there. ugh! do you know when they might do the re-release? as you know, lucas also had a tight/fatty filum but his cord ended in the proper place as braydon's does. do they understand how this particular type of tethered cord could retether? if not scar tissue, then how could fat get in there? i' m confused since our neurosurgeon said that this type of re-tethering rarely happens. could it be that braydon is just one of those? i'm always thinking about symptoms that lucas might have if he were to retether since he had no symptoms besides scoliosis when this was first released. when you say braydon had a change in bladder habits, do you mind elaborating? if you don't want to embarrass him by posting on the public forum, would you mind e-mailing me (deshea@...)? thanks carmell! and my best goes out to braydon and your family (as always . . .) deshea On Nov 17, 2006, at 11:42 PM, Carmell Burns wrote: > Hi , > > I'll be happy to answer your questions, based on our > experiences. > > <<They just released the filum, correct?>> > > Yes. Braydon had a fatty filum release surgery. > Braydon does not have any other spinal cord > complications - no lipoma, no syrinx, nothing that > would be an obvious problem. > > <<How and where has he retethered?>> > > His MRI last week showed " no change from previous > scan " . However, there were two radiologists that > looked at the scan, and the second radiologist (a > neuro-radiologist) wrote in his comments, " has this > patient had an initial release " ? I assume this means > the MRI looks like a fatty filum tether, not a scar > tissue build-up that happens post-release, like most > scans show (does that make sense?). His cord ends in > the normal spot (L1) but there is thick tissue that > appears to be tethering his spinal cord. > > Braydon's TC issue is complicated by the VEPTR device > that is attached to the L1 vertebrae. The > neurosurgeon said the first surgery was done via the > L3 site (laminectomy). This time they will go up to > L2 and try to release the tethering as high up as they > can, but that the VEPTR device might have created so > much scar tissue that they can't reach as high as the > tether is (again, does that make sense?). > > <<What were the symptoms he was having?>> > > Braydon's first symptom (looking back - hindsight is > 20/20) was a change in his bladder habits. In > September, his bowels seemed to be slowing down, even > while on laxatives. In October he had his routine > VEPTR expansion surgery. He has had some strange back > pain since the surgery. His lower back (along his > waistline) is constantly sore and achy. Sometimes he > gets needle-type pain in his back. Sometimes his legs > are weak or tingly. Hips, ribs, etc. are all > sometimes an issue. > > Basically, they think that he was starting to show > symptoms of a re-tether, then the VEPTR expansion > speeded up the process by stretching the spine just > that much too much. I believe he was starting to > re-tether since he was going through a growth spurt. > If a child is going to re-tether, it often happens > during a growth spurt. Braydon's VEPTR surgery just > magnified the problem. > > <<Did the nsg tell you this may happen?>> > > When Braydon had his first de-tether, our nsg said > that they have seen many 2-3 kids with simple fatty > filums that have re-tethered. The nsg also is a > believer that TC release surgery either improves or > prevents progression of scoliosis in most cases. > > Do you live in SLC? Who is the nsg treating Owen? > Braydon's nsg is Dr. at PCMC in SLC. He is > fabulous. If he isn't your nsg, maybe you could send > the MRI that will be done in a couple weeks to him and > a history and ask his opinion? > > I'd love to know more about Owen. Let me know if I > can clarify anything else. > > <<It looks like poor Braydon has had enough surgeries > to last a few lifetimes.>> > > Yes, but he doesn't mind. He has an amazing attitude > about surgery and these things. I'm very proud of > him. > > Carmell > > mom to Kara, idiopathic scoliosis, Blake 16, GERD and Braydon 11, > VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant > 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis > (fusion surgery 5/96), missing coccyx, fatty filum/TC (released > 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) > kidney, dbl ureter in left kidney, ureterocele (excized 6/95), > kidney reflux (reimplant surgery 1/97), neurogenic bladder, > bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, > clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes > cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes > (3/98), etc.http://carmellb-ivil.tripod.com/myfamily/ > > __________________________________________________________ > Sponsored Link > > Mortgage rates near 39yr lows. > $420k for $1,399/mo. Calculate new payment! > www.LowerMyBills.com/lre > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2006 Report Share Posted November 20, 2006 Thanks for all the info Carmell. The short version: Owen, now 2.5, was born with paralysed vocal cords which acts as an airway restriction so he spent 9 wks in the ICN and was on O2 until ~6 months. He has low tone, all g-tube fed (due to the vocal cords, tone and sensory issues- something we are working on) and has scoliosis secondary to a tight filum which was released in 1/06. We live in California and depending on the results of his MRI next week for leaking spinal fluid from the surgery we may go for a second opinion, although I do like our nsg. Owen had several sympotms of tethered cord, leaky bladder, constipation, pronated feet, low tone, scoli... all of which has greatly improved since the release. He didn't walk independant, crawl, get to sit, pull to stand... all until post surgery, most happening at 2 years old. And he is doing great now. He looks like a miny football player in 4T clothes- you'd never know from looking at him that he couldn't sit until 10-11 months old! We still have a long way to go- no stairs, no standing up without using furniture, jump, run- but boy is this kid determined! He is pretty much doing his own physical therapy all day. He gets physical, speech (for verbal apraxia), occupational (for feeding), aquatic and hippotherapy every week, plus a pre-pre-school class. Busy, we are. So that is Owen in a nutshell. I have been trying to get myself to write his story but I am finding it very difficult. but writing this is renewing my dedication to sharing our experience with others! Oh, for the scoliosis, due to his low tone, reflux and pectus excavatum, breathing concerns... Dr D'Astous decided not to cast him and just do the brace. He has measured up to 46, now at 18 out of brace. We had 2 other orthos before we found SLC. One was do nothing and wait, the other was go see the surgeon for rods. Lovely Dr D helped us get the MRI, which found the tethered cord. For that alone I am forever grateful to him and Mike Pond (Mike has spent a lot of time with us trying to piece together all of Owen's issues and make sure he is getting the best reatment possible) Re-reading this, Owen sounds pretty medically fragile on paper- but really he is a very funny and happy little boy who just wears braces on his back and feet, needs help with some physical activities and gets fed with a tube and he is oh so cute! Thanks for reading! allison & owen (3/04) --- Carmell Burns <cjbmom23@...> wrote: > Hi , > > I'll be happy to answer your questions, based on our > experiences. > > <<They just released the filum, correct?>> > > Yes. Braydon had a fatty filum release surgery. > Braydon does not have any other spinal cord > complications - no lipoma, no syrinx, nothing that > would be an obvious problem. > > <<How and where has he retethered?>> > > His MRI last week showed " no change from previous > scan " . However, there were two radiologists that > looked at the scan, and the second radiologist (a > neuro-radiologist) wrote in his comments, " has this > patient had an initial release " ? I assume this > means > the MRI looks like a fatty filum tether, not a scar > tissue build-up that happens post-release, like most > scans show (does that make sense?). His cord ends > in > the normal spot (L1) but there is thick tissue that > appears to be tethering his spinal cord. > > Braydon's TC issue is complicated by the VEPTR > device > that is attached to the L1 vertebrae. The > neurosurgeon said the first surgery was done via the > L3 site (laminectomy). This time they will go up to > L2 and try to release the tethering as high up as > they > can, but that the VEPTR device might have created so > much scar tissue that they can't reach as high as > the > tether is (again, does that make sense?). > > <<What were the symptoms he was having?>> > > Braydon's first symptom (looking back - hindsight is > 20/20) was a change in his bladder habits. In > September, his bowels seemed to be slowing down, > even > while on laxatives. In October he had his routine > VEPTR expansion surgery. He has had some strange > back > pain since the surgery. His lower back (along his > waistline) is constantly sore and achy. Sometimes > he > gets needle-type pain in his back. Sometimes his > legs > are weak or tingly. Hips, ribs, etc. are all > sometimes an issue. > > Basically, they think that he was starting to show > symptoms of a re-tether, then the VEPTR expansion > speeded up the process by stretching the spine just > that much too much. I believe he was starting to > re-tether since he was going through a growth spurt. > > If a child is going to re-tether, it often happens > during a growth spurt. Braydon's VEPTR surgery just > magnified the problem. > > <<Did the nsg tell you this may happen?>> > > When Braydon had his first de-tether, our nsg said > that they have seen many 2-3 kids with simple fatty > filums that have re-tethered. The nsg also is a > believer that TC release surgery either improves or > prevents progression of scoliosis in most cases. > > Do you live in SLC? Who is the nsg treating Owen? > Braydon's nsg is Dr. at PCMC in SLC. He is > fabulous. If he isn't your nsg, maybe you could > send > the MRI that will be done in a couple weeks to him > and > a history and ask his opinion? > > I'd love to know more about Owen. Let me know if I > can clarify anything else. > > <<It looks like poor Braydon has had enough > surgeries > to last a few lifetimes.>> > > Yes, but he doesn't mind. He has an amazing > attitude > about surgery and these things. I'm very proud of > him. > > Carmell > > > mom to Kara, idiopathic scoliosis, Blake 16, GERD > and Braydon 11, VACTERL, GERD, DGE, Titanium Rib > Project patient #137 (dbl implant 8/01), thoracic > insufficiency, rib anomalies, congenital scoliosis > (fusion surgery 5/96), missing coccyx, fatty > filum/TC (released 4/99), anal stenosis, chronic > constipation, horseshoe (cross-fused) kidney, dbl > ureter in left kidney, ureterocele (excized 6/95), > kidney reflux (reimplant surgery 1/97), neurogenic > bladder, bilateral hip dysplasia, right leg/foot > dyplasia, tibial torsion, clubfoot with 8 toes > (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, > single umblilical artery, tonsil-adnoidectomy and > ear tubes (3/98), etc. > http://carmellb-ivil.tripod.com/myfamily/ > > > > ________________________________________________________________________________\ ____ > Sponsored Link > > Mortgage rates near 39yr lows. > $420k for $1,399/mo. Calculate new payment! > www.LowerMyBills.com/lre > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2006 Report Share Posted November 20, 2006 Hi , Thanks for the details about Owen. <<He is pretty much doing his own physical therapy all day.>> This is our ortho's philosphy - HEALTHY kids (those with no underlying neuromuscular or whatever condition) tend to not need outside PT because being an active toddler is the BEST therapy. For example, pedaling a tricycle/bike helps kids who have had clubfoot repair. Walking up and down stairs too. The PTs use similar movements to strengthen the necessary muscles and soft tissue. Being an active toddler/pre-schooler does the same thing. Braydon didn't have routine PT appts, just appts every 3 months to keep an eye on things. He did his own PT. <<Re-reading this, Owen sounds pretty medically fragile on paper-...>> I totally understand! When I describe Braydon to people on paper, they must think he looks like some science-fiction creature! They can't believe he looks like a healthy active boy who loves to play hard. Our kids are amazing, aren't they? I will keep my fingers, eyes, toes and whatever else I can find crossed that there are NO problems with spinal fluid leaks and that he'll never have a re-tethered cord again. Carmell mom to Kara, idiopathic scoliosis, Blake 16, GERD and Braydon 11, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ ________________________________________________________________________________\ ____ The all-new beta Fire up a more powerful email and get things done faster. http://new.mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2006 Report Share Posted November 20, 2006 Hi Deshea, Thanks for the well-wishes. They are very much appreciated. <<do you know when they might do the re-release?>> The re-release is scheduled for Dec. 13. Not planning on changing the date. <<do they understand how this particular type of tethered cord could retether? if not scar tissue, then how could fat get in there?>> Well, not sure I have the scientific answers. What I do know is that scar tissue from a release surgery is VERY hard to detect on a subsequent MRI scan. The VAST majority of kids with " just " a fatty filum never have re-tether problems. When they do the initial release, they are able to cut the fatty tissue away from the spinal cord and then it never is a problem in the future. Those rare kids (assuming Braydon is one) can potentially have recurrances of the fat re-connecting with the spinal cord, and with a growth spurt, you may see outward symptoms. They may have scar tissue that builds up too much and re-tethers the cord. They may develop a syrinx or pocket of fluid that re-tethers the cord. Lots of things " could " happen, but rarely do happen. Braydon's case is compounded because of the VEPTR promoting/stimulating growth of the tissues (soft and bone both) in that L1 area. Clear as mud? <<could it be that braydon is just one of those?>> Again, not scientific, but I believe Braydon is just one of those... <<when you say braydon had a change in bladder habits, do you mind elaborating?>> Actually, Braydon's bladder has been consistant. His problem has been a change in bowel habits. (I think I mentioned bladder, but only because it happens in some cases. Sorry for the confusion.) Braydon has been on various bowel management plans (medication) for most of his life to have regular bowel movements daily. In September, before his VEPTR expansion, he and I talked about how his current plan (Zelnorm) seems to be not working. He was getting more and more constipated, going 3-4 days between bms (not good), had random vomitting, constant nausea, etc. After the VEPTR expansion, these symptoms escalated. This change in bowel issues and the back and leg pain combined with the questionable MRI scan all lead to a re-release surgery. Sorry if this was too much information. Sometimes I don't know when enough is enough... LOL HTH - anyway, Carmell mom to Kara, idiopathic scoliosis, Blake 16, GERD and Braydon 11, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ ________________________________________________________________________________\ ____ Sponsored Link Mortgage rates near 39yr lows. $420k for $1,399/mo. Calculate new payment! www.LowerMyBills.com/lre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2006 Report Share Posted November 20, 2006 Hi Bert, <<Terrible to think of Braydon being uncomfortable when i have a picture of him pulling Bridge and Siobhan in a wagon at at great speed in the SLC playroom 3 days after an expansion surgery.>> It's these images I have in my mind that keep me going. I KNOW that when he's fully recovered, he will be back to his active self and ready to go. Thanks for thinking of us. Carmell mom to Kara, idiopathic scoliosis, Blake 16, GERD and Braydon 11, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2006 Report Share Posted November 22, 2006 HI Carmell, I am always thinking of you and Braydon and what a marvellous mentor you both are to so many of us. I am very interested in your connstipation meds discussions woth Braydon as Bridge and I have been discussing the same prob. Although she is only 5 I just think this has to be a n open discussion as she has been medicated since she was 18 months and we are trying to reduce or change medication and give her some control but finding it really hard to find the balance. I don't really want to return to the specialist unti l have a better idea of how she is feeling etc and what medical options there are. I knew bowel issues went with connective tissue problems but I didn't realize they were a sign of tether cord too. HI to Braydon Bert Carmell Burns <cjbmom23@...> wrote: Hi Bert, <<Terrible to think of Braydon being uncomfortable when i have a picture of him pulling Bridge and Siobhan in a wagon at at great speed in the SLC playroom 3 days after an expansion surgery.>> It's these images I have in my mind that keep me going. I KNOW that when he's fully recovered, he will be back to his active self and ready to go. Thanks for thinking of us. Carmell mom to Kara, idiopathic scoliosis, Blake 16, GERD and Braydon 11, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2006 Report Share Posted November 22, 2006 Carmell, I tried phoning you yesterday, but had no luck. I will try again this afternoon. If I cant get through today, can you please give me a ring, when you get a free moment.? Sincerely, HRH Re: Braydon update HI Carmell, I am always thinking of you and Braydon and what a marvellous mentor you both are to so many of us. I am very interested in your connstipation meds discussions woth Braydon as Bridge and I have been discussing the same prob. Although she is only 5 I just think this has to be a n open discussion as she has been medicated since she was 18 months and we are trying to reduce or change medication and give her some control but finding it really hard to find the balance. I don't really want to return to the specialist unti l have a better idea of how she is feeling etc and what medical options there are. I knew bowel issues went with connective tissue problems but I didn't realize they were a sign of tether cord too. HI to Braydon Bert Carmell Burns <cjbmom23@...> wrote: Hi Bert, <<Terrible to think of Braydon being uncomfortable when i have a picture of him pulling Bridge and Siobhan in a wagon at at great speed in the SLC playroom 3 days after an expansion surgery.>> It's these images I have in my mind that keep me going. I KNOW that when he's fully recovered, he will be back to his active self and ready to go. Thanks for thinking of us. Carmell mom to Kara, idiopathic scoliosis, Blake 16, GERD and Braydon 11, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2006 Report Share Posted November 22, 2006 Hey Bert, Constipation has been a focus for many years at our house. Braydon's constipation stems from several things - being born with anal stenosis (5 months of anal dilations to resolve), a tethered spinal cord (potentially damaging nerves to the bowels), Gastroparesis (delayed emptying of the stomach that encourages constipation), a neurogenic bladder, etc. Any one of those issues could be the sole cause of the constipation, or it could be a random/idiopathic case. No one will know for sure. Braydon has been on different meds to control constipation, in addition to avoiding constipating foods. He took Miralax for about 3 years with great success. Then, his body seemed to " out grow " the effects of the Miralax. We then changed to ExLax (25-37mgs daily) and had mostly success for a couple of years. This past spring the GI doc suggested that Braydon start taking Zelnorm. For the first 4 months on Zelnorm, Braydon did great. It helps with motility (he ate much better), no more random vomitting, reduced (dramatically) his gassy-ness, and helped him have a predictable bowel movement every day. In September we both noticed that the effects of Zelnorm were not what they had been in the beginning. We wondered if it was just his body becoming immune to the effects, or what. After his VEPTR expansion in October, we realized that the GI problems (including constipation coming back with a vengance) that its probably due to a re-tether of the spinal cord, and not the Zelnorm losing its effects. Any child who is prone to constipation needs to have a daily bowel movement (at least) that is the consistancy of peanut butter (or pudding - Braydon used to call it his " pudding pile " ). Anything firmer leads to impaction and more complications with constipation. The stool should not be watery. There is sometimes a fine-line to walk in order to get the right recipe figured out. Miralax is a good laxative because it is a non-stimulant and it works by adding liquid to the stools to make it easier to push out. However, sometimes kids need more than just Miralax. Sometimes they need the stimulant to give them the extra push to empty daily. The biggest worry with chronic constipation is developing mega-colon - where the colon has stretched out from stool being impacted for a long time. If the colon is stretched too much, too long, there is a chance is won't go back to its natural state. Not good for future bowel control and just not good overall. I hope you and Bridget can find the right answers, and find the right docs to help you. Hopefully there is an easy solution. I wish I knew the right answers for you. Sorry to ramble about poop issues. Carmell mom to Kara, idiopathic scoliosis, Blake 16, GERD and Braydon 11, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ ________________________________________________________________________________\ ____ Sponsored Link Online degrees - find the right program to advance your career. www.nextag.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2006 Report Share Posted November 23, 2006 Thanks for the detailed reply, Carmell. No apologies needed for rambling about poop issues as they can bring family life to a halt and be the focus of the house, which compounds the problem. Bridget has been on parachoc which is a non stimulant, basically just parrafin oil and flavouring since she was 1but it is losing its effectiveness and can ause leakage which is embarrassing for her. I suppose I should take her back to the specialist and go through the options. I had no idea it was important to " go " every day but it does make sense. Thanks again Bert Carmell Burns <cjbmom23@...> wrote: Hey Bert, Constipation has been a focus for many years at our house. Braydon's constipation stems from several things - being born with anal stenosis (5 months of anal dilations to resolve), a tethered spinal cord (potentially damaging nerves to the bowels), Gastroparesis (delayed emptying of the stomach that encourages constipation), a neurogenic bladder, etc. Any one of those issues could be the sole cause of the constipation, or it could be a random/idiopathic case. No one will know for sure. Braydon has been on different meds to control constipation, in addition to avoiding constipating foods. He took Miralax for about 3 years with great success. Then, his body seemed to " out grow " the effects of the Miralax. We then changed to ExLax (25-37mgs daily) and had mostly success for a couple of years. This past spring the GI doc suggested that Braydon start taking Zelnorm. For the first 4 months on Zelnorm, Braydon did great. It helps with motility (he ate much better), no more random vomitting, reduced (dramatically) his gassy-ness, and helped him have a predictable bowel movement every day. In September we both noticed that the effects of Zelnorm were not what they had been in the beginning. We wondered if it was just his body becoming immune to the effects, or what. After his VEPTR expansion in October, we realized that the GI problems (including constipation coming back with a vengance) that its probably due to a re-tether of the spinal cord, and not the Zelnorm losing its effects. Any child who is prone to constipation needs to have a daily bowel movement (at least) that is the consistancy of peanut butter (or pudding - Braydon used to call it his " pudding pile " ). Anything firmer leads to impaction and more complications with constipation. The stool should not be watery. There is sometimes a fine-line to walk in order to get the right recipe figured out. Miralax is a good laxative because it is a non-stimulant and it works by adding liquid to the stools to make it easier to push out. However, sometimes kids need more than just Miralax. Sometimes they need the stimulant to give them the extra push to empty daily. The biggest worry with chronic constipation is developing mega-colon - where the colon has stretched out from stool being impacted for a long time. If the colon is stretched too much, too long, there is a chance is won't go back to its natural state. Not good for future bowel control and just not good overall. I hope you and Bridget can find the right answers, and find the right docs to help you. Hopefully there is an easy solution. I wish I knew the right answers for you. Sorry to ramble about poop issues. Carmell mom to Kara, idiopathic scoliosis, Blake 16, GERD and Braydon 11, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ __________________________________________________________ Sponsored Link Online degrees - find the right program to advance your career. www.nextag.com --------------------------------- Everyone is raving about the all-new beta. Quote Link to comment Share on other sites More sharing options...
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