Guest guest Posted August 28, 2008 Report Share Posted August 28, 2008 I worked in surgery so I did not get the luxury of seeing the children post-op during their recovery, but I do know that repairing the fatty filum will stop any further deterioration of the nerves affecting the lower extremities and of the bladder and bowel. Additionally, the recovery is fairly quick, but they do have to lie flat between 1-5 days to prevent any leaks of the CSF (fluid around the spinal cord), and to allow the fluid to build back up again. I don’t know what your son’s symptoms are, but these are some of the things that can indicate a fatty filum: -muscle stiffness, weakness, or atrophy -intermittent pain in the back, legs or the lower back -abnormal or absent reflexes in the knees and legs -bladder or bowel problems -numbness, tingling, pins and needles, in legs and feet -gradual tightening of any already deformed feet So I am guessing when the above things get better, their gross motor skills will get better. Dinkins-Borkowski; Nolan(5) nocf, Phoebe(3) Ds & cf Phoebe Updates CLICK HERE " The future belongs to those who believe in the beauty of their dreams. " – Eleanor Roosevelt From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of Freddies Mommy Sent: Thursday, August 28, 2008 8:40 PM To: DownSyndromeInfoExchange Subject: [DownSyndromeInfoExchange] Dinkins-Borkowski Thank You - Thank You - Thank You - for responding! I feel much better. I do have some questions though. I will go over them with the surgeon. We have a consult first then the decision to have or not have the surgery. Can I ask you, should we expect to see over all improvement in the gross motor areas from Freddie? It has always been his worst area. He's never really been a mover. Now I suspect that is because he was in pain and suffering from this condition? Thank you again!!! nna Mommy to Freddie 7 yrs Full Inclusion 1st Grade The Will of God will never take you where the Grace of God will not protect you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2008 Report Share Posted August 28, 2008 Please keep us updated on how things are going. Dinkins-Borkowski; Nolan(5) nocf, Phoebe(3) Ds & cf Phoebe Updates CLICK HERE " The future belongs to those who believe in the beauty of their dreams. " – Eleanor Roosevelt From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of Freddies Mommy Sent: Thursday, August 28, 2008 8:40 PM To: DownSyndromeInfoExchange Subject: [DownSyndromeInfoExchange] Dinkins-Borkowski Thank You - Thank You - Thank You - for responding! I feel much better. I do have some questions though. I will go over them with the surgeon. We have a consult first then the decision to have or not have the surgery. Can I ask you, should we expect to see over all improvement in the gross motor areas from Freddie? It has always been his worst area. He's never really been a mover. Now I suspect that is because he was in pain and suffering from this condition? Thank you again!!! nna Mommy to Freddie 7 yrs Full Inclusion 1st Grade The Will of God will never take you where the Grace of God will not protect you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2008 Report Share Posted August 28, 2008 We have just this week started to see some new issues with bladder control. The constipation has been all his life. It was always blamed on his thyroid issues. The more I read the angrier I get at the docs for not catching this sooner. I have been trying to get referrals for years. Too may folks throwing up the "DS Card". Thank you again!!! Bless you for responding!!! nnaMommy to Freddie 7yrsFull Inclusion 1st GradeThe Will of God will never take you where the Grace of God will not protect you. Subject: RE: [DownSyndromeInfoExchange] Dinkins-BorkowskiTo: DownSyndromeInfoExchange Date: Thursday, August 28, 2008, 8:40 PM I worked in surgery so I did not get the luxury of seeing the children post-op during their recovery, but I do know that repairing the fatty filum will stop any further deterioration of the nerves affecting the lower extremities and of the bladder and bowel. Additionally, the recovery is fairly quick, but they do have to lie flat between 1-5 days to prevent any leaks of the CSF (fluid around the spinal cord), and to allow the fluid to build back up again. I don’t know what your son’s symptoms are, but these are some of the things that can indicate a fatty filum: -muscle stiffness, weakness, or atrophy -intermittent pain in the back, legs or the lower back -abnormal or absent reflexes in the knees and legs -bladder or bowel problems -numbness, tingling, pins and needles, in legs and feet -gradual tightening of any already deformed feet So I am guessing when the above things get better, their gross motor skills will get better. Dinkins-Borkowski; Nolan(5) nocf, Phoebe(3) Ds & cf Phoebe Updates CLICK HERE "The future belongs to those who believe in the beauty of their dreams."– Eleanor Roosevelt From: DownSyndromeInfoExc hange@yahoogroup s.com [mailto:DownSyndrom eInfoExchange@ yahoogroups. com] On Behalf Of Freddies MommySent: Thursday, August 28, 2008 8:40 PMTo: DownSyndromeInfoExc hange@yahoogroup s.comSubject: [DownSyndromeInfoEx change] Dinkins-Borkowski Thank You - Thank You - Thank You - for responding! I feel much better. I do have some questions though. I will go over them with the surgeon. We have a consult first then the decision to have or not have the surgery.Can I ask you, should we expect to see over all improvement in the gross motor areas from Freddie? It has always been his worst area. He's never really been a mover. Now I suspect that is because he was in pain and suffering from this condition?Thank you again!!!nnaMommy to Freddie 7 yrs Full Inclusion 1st GradeThe Will of God will never take you where the Grace of God will not protect you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2008 Report Share Posted August 28, 2008 Yikes I think I have those. ; ) Seriously. My back problems were never diagnosed specifically. But I have one or all of these. Steph ( praying for this little feller) RE: [DownSyndromeInfoExchange] Dinkins-Borkowski I worked in surgery so I did not get the luxury of seeing the children post-op during their recovery, but I do know that repairing the fatty filum will stop any further deterioration of the nerves affecting the lower extremities and of the bladder and bowel. Additionally, the recovery is fairly quick, but they do have to lie flat between 1-5 days to prevent any leaks of the CSF (fluid around the spinal cord), and to allow the fluid to build back up again. I don’t know what your son’s symptoms are, but these are some of the things that can indicate a fatty filum: -muscle stiffness, weakness, or atrophy -intermittent pain in the back, legs or the lower back -abnormal or absent reflexes in the knees and legs -bladder or bowel problems -numbness, tingling, pins and needles, in legs and feet -gradual tightening of any already deformed feet So I am guessing when the above things get better, their gross motor skills will get better. Dinkins-Borkowski; Nolan(5) nocf, Phoebe(3) Ds & cf Phoebe Updates CLICK HERE "The future belongs to those who believe in the beauty of their dreams."– Eleanor Roosevelt From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of Freddies MommySent: Thursday, August 28, 2008 8:40 PMTo: DownSyndromeInfoExchange Subject: [DownSyndromeInfoExchange] Dinkins-Borkowski Thank You - Thank You - Thank You - for responding! I feel much better. I do have some questions though. I will go over them with the surgeon. We have a consult first then the decision to have or not have the surgery.Can I ask you, should we expect to see over all improvement in the gross motor areas from Freddie? It has always been his worst area. He's never really been a mover. Now I suspect that is because he was in pain and suffering from this condition?Thank you again!!!nnaMommy to Freddie 7 yrs Full Inclusion 1st GradeThe Will of God will never take you where the Grace of God will not protect you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2008 Report Share Posted August 28, 2008 You could have a nerve being squeezed by a bulging disc. I have some too that intermittently cause me some of those problems too. You might mention it to your doc if they happen all the time or keep you from functioning. Yall had better watch out, I might have to start charging you! Dinkins-Borkowski; Nolan(5) nocf, Phoebe(3) Ds & cf Phoebe Updates CLICK HERE " The future belongs to those who believe in the beauty of their dreams. " – Eleanor Roosevelt From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of Carlson Sent: Thursday, August 28, 2008 10:55 PM To: DownSyndromeInfoExchange Subject: Re: [DownSyndromeInfoExchange] Dinkins-Borkowski Yikes I think I have those. ; ) Seriously. My back problems were never diagnosed specifically. But I have one or all of these. Steph ( praying for this little feller) ----- Original Message ----- From: Dinkins-Borkowski To: DownSyndromeInfoExchange Sent: Thursday, August 28, 2008 11:40 PM Subject: RE: [DownSyndromeInfoExchange] Dinkins-Borkowski I worked in surgery so I did not get the luxury of seeing the children post-op during their recovery, but I do know that repairing the fatty filum will stop any further deterioration of the nerves affecting the lower extremities and of the bladder and bowel. Additionally, the recovery is fairly quick, but they do have to lie flat between 1-5 days to prevent any leaks of the CSF (fluid around the spinal cord), and to allow the fluid to build back up again. I don’t know what your son’s symptoms are, but these are some of the things that can indicate a fatty filum: -muscle stiffness, weakness, or atrophy -intermittent pain in the back, legs or the lower back -abnormal or absent reflexes in the knees and legs -bladder or bowel problems -numbness, tingling, pins and needles, in legs and feet -gradual tightening of any already deformed feet So I am guessing when the above things get better, their gross motor skills will get better. Dinkins-Borkowski; Nolan(5) nocf, Phoebe(3) Ds & cf Phoebe Updates CLICK HERE " The future belongs to those who believe in the beauty of their dreams. " – Eleanor Roosevelt From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of Freddies Mommy Sent: Thursday, August 28, 2008 8:40 PM To: DownSyndromeInfoExchange Subject: [DownSyndromeInfoExchange] Dinkins-Borkowski Thank You - Thank You - Thank You - for responding! I feel much better. I do have some questions though. I will go over them with the surgeon. We have a consult first then the decision to have or not have the surgery. Can I ask you, should we expect to see over all improvement in the gross motor areas from Freddie? It has always been his worst area. He's never really been a mover. Now I suspect that is because he was in pain and suffering from this condition? Thank you again!!! nna Mommy to Freddie 7 yrs Full Inclusion 1st Grade The Will of God will never take you where the Grace of God will not protect you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2008 Report Share Posted August 28, 2008 NP Feel free to email me privately if you need anything! Dinkins-Borkowski; Nolan(5) nocf, Phoebe(3) Ds & cf Phoebe Updates CLICK HERE " The future belongs to those who believe in the beauty of their dreams. " – Eleanor Roosevelt From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of Freddies Mommy Sent: Thursday, August 28, 2008 10:47 PM To: DownSyndromeInfoExchange Subject: RE: [DownSyndromeInfoExchange] Dinkins-Borkowski We have just this week started to see some new issues with bladder control. The constipation has been all his life. It was always blamed on his thyroid issues. The more I read the angrier I get at the docs for not catching this sooner. I have been trying to get referrals for years. Too may folks throwing up the " DS Card " . Thank you again!!! Bless you for responding!!! nna Mommy to Freddie 7yrs Full Inclusion 1st Grade The Will of God will never take you where the Grace of God will not protect you. From: Dinkins-Borkowski Subject: RE: [DownSyndromeInfoExchange] Dinkins-Borkowski To: DownSyndromeInfoExchange Date: Thursday, August 28, 2008, 8:40 PM I worked in surgery so I did not get the luxury of seeing the children post-op during their recovery, but I do know that repairing the fatty filum will stop any further deterioration of the nerves affecting the lower extremities and of the bladder and bowel. Additionally, the recovery is fairly quick, but they do have to lie flat between 1-5 days to prevent any leaks of the CSF (fluid around the spinal cord), and to allow the fluid to build back up again. I don’t know what your son’s symptoms are, but these are some of the things that can indicate a fatty filum: -muscle stiffness, weakness, or atrophy -intermittent pain in the back, legs or the lower back -abnormal or absent reflexes in the knees and legs -bladder or bowel problems -numbness, tingling, pins and needles, in legs and feet -gradual tightening of any already deformed feet So I am guessing when the above things get better, their gross motor skills will get better. Dinkins-Borkowski; Nolan(5) nocf, Phoebe(3) Ds & cf Phoebe Updates CLICK HERE " The future belongs to those who believe in the beauty of their dreams. " – Eleanor Roosevelt From: DownSyndromeInfoExc hange@yahoogroup s.com [mailto:DownSyndrom eInfoExchange@ yahoogroups. com] On Behalf Of Freddies Mommy Sent: Thursday, August 28, 2008 8:40 PM To: DownSyndromeInfoExc hange@yahoogroup s.com Subject: [DownSyndromeInfoEx change] Dinkins-Borkowski Thank You - Thank You - Thank You - for responding! I feel much better. I do have some questions though. I will go over them with the surgeon. We have a consult first then the decision to have or not have the surgery. Can I ask you, should we expect to see over all improvement in the gross motor areas from Freddie? It has always been his worst area. He's never really been a mover. Now I suspect that is because he was in pain and suffering from this condition? Thank you again!!! nna Mommy to Freddie 7 yrs Full Inclusion 1st Grade The Will of God will never take you where the Grace of God will not protect you. Quote Link to comment Share on other sites More sharing options...
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