Guest guest Posted June 25, 2006 Report Share Posted June 25, 2006 My daughter has spina bifida occulta and they are now saying that she has a tethered cord. She goes to the NS next month for her MRI's and other testing. She has had a UTI for going on 4 months now, all the meds are not working. She is also having problems with her bowels. To the point the dr's have been having me give her enemas on a regular basis. She is gaining on avg. 1 1/2 lbs. per week. She just turned six and I have never been so terrified for her. If any one in a similar situation can give me any " tips " for her pain it would be greatly appreciated. I just don't know what to expect. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2006 Report Share Posted June 26, 2006 I'm so sorry you're going through this. It is hard to see our kids and grandchildren hurt, isn't it? My granddaughter, Mackenzie, is too young to tell us about her pain, although we can tell she is having some now. She was untethered in October 2005 and has already started to retether. She has another MRI in August and probable surgery again soon after that. She also has had problems since birth with constipation, first blamed on milk/soy protein intolerance which she did have, but now we know it was the cord problems causing her the most trouble. She has also had problems with urinary reflux and constant UTI's. She had a ureteral reimplantation on the left in March 2005 and a deflux on the right in May, 2006. She will have testing done in August so we will be able to tell if the deflux has worked or not. Hopefully she can get off the prophylactic antibiotics. She is so asymptomatic with her urinary infections, we can only go by her temperatures and then take her in to be cathed (because she has a hemangioma on her labia she cannot use the sticky bags they usually use). I hope you find answers for her pain. You might try some massage or deep breathing exercises to help her relax. Hugs, Diane V. 6 year old My daughter has spina bifida occulta and they are now saying that she has a tethered cord. She goes to the NS next month for her MRI's and other testing. She has had a UTI for going on 4 months now, all the meds are not working. She is also having problems with her bowels. To the point the dr's have been having me give her enemas on a regular basis. She is gaining on avg. 1 1/2 lbs. per week. She just turned six and I have never been so terrified for her. If any one in a similar situation can give me any " tips " for her pain it would be greatly appreciated. I just don't know what to expect. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2006 Report Share Posted June 26, 2006 BUmmer about her not feeling well, and the tsc concerns. There is lots of information in this group Someone mentioned Dr. Wehby's work with tsc last month http://www.npr.org/templates/story/story.php?storyId=5309511<http://wwwnpr.org/t\ emplates/story/story.php?storyId=5309511> Here is one of her abstracts 1: Pediatr Neurosurg.<javascript:AL_get(this,%20'jour',%20'Pediatr%20Neurosurg.');> 2004 Mar-Apr;40(2):51-7; discussion 58. Related Articles,<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed & cmd=Display & do\ pt=pubmed_pubmed & from_uid=15292632> Links<javascript:PopUpMenu2_Set(Menu15292632);> <http://www.ncbi.nlm.nih.gov/entrez/utils/lofref.fcgi?PrId=3030 & uid=15292632 & db=\ pubmed & url=http://content.karger.com/produktedb/produkte.asp?typ=fulltext & file=P\ NE2004040002051> Comment in: a.. Pediatr Neurosurg. 2005 Jan-Feb;41(1):58; author reply 59-60.<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed & cmd=Retrieve & dopt\ =Abstract & list_uids=15886517 & itool=pubmed_docsum> Occult tight filum terminale syndrome: results of surgical untethering. Wehby MC<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed & cmd=Search & itool=pubm\ ed_Abstract & term=%22Wehby+MC%22%5BAuthor%5D>, O'Hollaren PS<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed & cmd=Search & itool=pubm\ ed_Abstract & term=%22O%27Hollaren+PS%22%5BAuthor%5D>, Abtin K<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed & cmd=Search & itool=pubme\ d_Abstract & term=%22Abtin+K%22%5BAuthor%5D>, Hume JL<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed & cmd=Search & itool=pubm\ ed_Abstract & term=%22Hume+JL%22%5BAuthor%5D>, s BJ<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed & cmd=Search & itool=pubm\ ed_Abstract & term=%22s+BJ%22%5BAuthor%5D>. Divisions of Pediatric Neurosurgery and Pediatric Urology, Emanuel Children's Hospital, Portland, Oreg., USA. monicawehby@... The entity of an occult tight filum terminale syndrome, characterized by clinical findings consistent with a tethered cord syndrome, but with the conus ending in a normal position, has been recognized recently. The indications for sectioning the filum terminale in this situation are not well characterized and are controversial. We report a retrospective review of a consecutive series of 60 children (ages 3-18 years) with a diagnosis of occult tight filum terminale syndrome who underwent section of the filum and were followed for more than 6 months (mean 13.9 months). The criteria for surgical intervention were (1) spina bifida occulta, (2) progressive bladder instability unresponsive to conservative measures, (3) urological/nephrological evaluation to confirm or rule out nonneurogenic etiology, and (4) two or more of the following: (a) bowel involvement (fecal incontinence or chronic constipation), ( lower extremity weakness, © gait changes, (d) reflex/tone abnormalities, (e) sensory disturbances, (f) back/leg pain, (g) orthopedic abnormalities/limb length discrepancy, (h) scoliosis/lordosis, (i) recurrent urinary tract infections, (j) abnormal voiding cystourethrogram/ultrasound, (k) syringomyelia, and (l) neurocutaneous stigmata. Postoperatively, urinary incontinence/retention showed complete resolution in 52%, marked improvement (>95% resolution) in 35%, moderate improvement (>75%) in 6%, minimal improvement (> 50%) in 6%, and no improvement (<50%) in 2%. Fecal incontinence completely resolved in 56%, improved in 41%, and was unchanged in 3%. Weakness, sensory abnormalities, and pain improved or resolved in all patients. If it's any consolation, I'm 38 and didn't figure out that I had this 'til 37, and the surgery has helped a lot in my case. I'm still walking and I have use of my bladder/bowel, not all perfectly nor pain-free but they work sufficient to get around. So, hopefully at 6, she will have a lot more chances of neurologic improvement. What I mean, is that the shorter time that the nerves have been stressed/injured, better chances of improving. The other big issue as far as neurologic involvement is the type of tether. Try to take big deep breaths and take one day at a time, you'll be receiving a lot of information (hopefully) from your doctors, you may need more than one opinion. Another issue I was wondering is if you've tried addressing the constipation with fiber/oral medications until you get more information about the possible tsc, you might want to ask the pediatrician about adding something by mouth to see if she can get a little more comfortable. Best wishes HAng in there AG 6 year old My daughter has spina bifida occulta and they are now saying that she has a tethered cord. She goes to the NS next month for her MRI's and other testing. She has had a UTI for going on 4 months now, all the meds are not working. She is also having problems with her bowels. To the point the dr's have been having me give her enemas on a regular basis. She is gaining on avg. 1 1/2 lbs. per week. She just turned six and I have never been so terrified for her. If any one in a similar situation can give me any " tips " for her pain it would be greatly appreciated. I just don't know what to expect. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2006 Report Share Posted June 28, 2006 Hi -- My daughter is 7 and just had her cord surgery last Friday. I am a little surprised that your dr is diagnosing tc when she hasn't seen a neuro or had am MRI yet. There are certainly other aspects of SBO that could cause bowel and bladder issues. Are you on the spina bifida list? I would highly recommend it as these issues are common and managed in many ways. While tethered cord could be the issue it may not be as well. As for the surgery, if it comes to that. My daughter had it on Friday and did very well. We had some bumps getting pain management down over the first 24 hours (crappy nurse didn't help), but once we did she was reasonably comfortable. Good luck. LEt us know what the neuro says after he sees the MRI. Donna S > > My daughter has spina bifida occulta and they are now saying that she > has a tethered cord. Quote Link to comment Share on other sites More sharing options...
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