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Is there anyone out there that has a child with this syndrome?
My daughter is now 5 yrs old and continues to have uti's and bouts of constipation. Has anyone heard of any new treatments?
I am looking for any information related to this syndrome, organizations, support groups, new research.
Any information would be great.
MiraLax Constipation Pain Imperforate anus Incontinence Spina bifida Diarrhea
We are the parents of a 4 month old with this condition. He has not yet had any of the problems you are having.
We are interested in conversing with other parents of children with Caudal Regression. Please (if you would like to) send us an email via the address in our profile.
thank you.
Pull-thru Network is a support group for parents of children born with anorectal disorders and the related diagnoses. Caudal regression is one of those associated diagnoses and there are members in PTN who have children with caudal regression and who are dealing with the same issues as you are with your daughter. Email me and I can set up membership in PTN for you so you can be in touch with other families - and so your daughter can know that there are other children with similar challenges.
Bonnie McElroy
Executive Director
Pull-thru Network, Inc.
PTNmail@charter.net
www.PullthruNetwork.org
My 22 month old baby daughter has just been diagnosed with this syndrome a few days ago. I am afraid, cos it looks like a serious abnormality. I have to be stong as my wife cannot comprehend the syndrome. I do not know what are the long term effects. I cry when my child compains of pain. She has been going for treatment for club feet since she was one month. I was optimastic she would lead an average normal life, now it seems that is not going to happen. Maybe experience from from other parents of children with this syndrome could help me understand what to expect and how to repond and treat my baby.
Any discussion on the subject would help.
Thanx.
Hi, my seven year old son has Caudal Regression/Sacral Agenesis. We have a great support group on Yahoo, the address is http://groups.yahoo.com/group/caudalregressionsyndrome/ . There is an active message board, and we have live chats twice a week. You can also email me directly with any questions at Conni60640@aol.com.
We are also members of the Pull Thru Network that Bonnie had mentioned, and have been since Billy was eight months of age and got constipated after starting solid foods. He was born with an imperforate anus. He takes a nightly dose of Exlax to keep things moving.
I hope to see you on the Caudal Regression Syndrome site!
Connie, mom to Billy
We found out that my grandson Terrek had Caudal when my daughter was 26 weeks pregnant.
It was not easy to find out any information on this because it is so rare.
Terrek is missing his L-3 thru L-5 of his spine and his sacrum so he has little to no feelings in
his legs.
Is this anything close to what you are dealing with?
My son is 3 1/2 months old and was diagnosed with caudal regression while in the nicu. I have researched many hours online trying to find information about this and have only been mildly successful. It's been so frustrating because I want to understand more than I do! He's young though and will be going to the spina bifida clinic soon to find out for sure what's going on with his little back.... I'd love to talk to parents whose children have this syndrome and compare notes - even with the variability of the disease. Please feel free to email me! thanks!
I would be happy if this information is helpful to any of you.My daughter is suffering from Caudal regression syndrome. There is complete agenesis of sacrum. According to MRI done on Sept, 2002, her sacrum, L4 & L5 is missing. Her legs are thin and deformed. She cannot walk independently. She walks with help of a walker. There is no control over her bowel and bladder. She is a constipated child. According to some doctors she has partial sensation in her legs.
Matter of Concern.1) Incontinence of bowel & bladder.2) Contractures in some parts of lower limbs.3) Mobility.4) Deformity of lower limbs.
Present Treatment -1) Splints given for knees & ankles which she wears for 2-3 hrs. daily.
2) Complete wash out for bowel management daily.3) Advised detherising of chord by a neurosurgeon.
Note-1) Mentally normal like any other child of her age. 2) Seems to have full sensation in her legs as she responds immediately to touch & tickles done on her feet.
my daughter is 17 months old and she was diagnosed caudal regression syndrome just after her birth ,she has no control on bladder and bowel and has deformed legs which she cannot move but she has some sensations in her lower part of body .according to her scan reports she has no sacrum no lumbar vertebrae her spine finishes at T9 level and her spinal cord endsat T6 level.when she was born we didn,t beleive that she might be even sit in the future because her backbone atT9 level protude outward and no bone b/w it and pelvis but she is very intelligent she has a control on her upper part of body she can sit well and started crawling .
My son is 11 months old and has caudal regression syndrome, diagnosed at birth. I would love to share information with you.
my son has caudal regression syndrome. ultrasound picked up on deformities. Diagnosed at birth. I recently read about a new experiment with urinary rewiring. It has been successful in children with spina bifida. I will speak to my urologist on my next visit to find out if it is an option for children with CRS. and what kind of side effects etc. may come with this option.
hi my son daniel is 3 years old and has cadual regression syndrome he has gone through alot of treatment i havent heard of too many more treatments the constipation can be controlled with stool softners and the uti unfortinatly to my understanding come with the condition my son has been very healty the important thing is to keep monitoring his kidneys and keeping with the specilists my son is doing very well and is even walking a little its a lot to deal with just give a lot a love and it goes a long way
hi dear baker family ,this is swam I would like to know if you got any information about urinary rewiring which you wrote last time in your notes please inform me any hope of improvement if you know write me on my email I willl be happy to have a live conversation with you .thanks.
My daughter is suffering from CRS and ha sbeen advised for 'matrofinoff'.Has anyone heard of it? If yes please reply and how far does it works.
My 6 month old daughter has CRS. She had a club foot on the left leg (now on maintenance after several casts), a reduced right limb, a cloacea, imperforate anus and omphalecele.
She just had her tethered cord released, but after that she has not been able to move her left leg and starting having constipation then diarrhea.
Was wondering if anyone can relate and what kind of treatment your child has had? Would certainly like to learn from others.
I am a diabetic and have been for almost 27 yrs but my life changed when my daughter was diagnosed when I was still pregnant with her and was born in March '99. She will be 10 here shortly and is doing very well. Her backbone ends at T-11 ad her legs are small and in a permanent bent positon, as if one is sitting cross legged, but walks on her hands and always remembers to hold them up. She had a vesecostomy an opening for her bladder in order for it to drain properly but has only had 1 mild bladder infection in all these years. Constipation can be a problem but as long as she drinks enough she can use her tummy muscles to help, but still has to wear a diaper to catch the urine. She has adjusted well and is very independant and smart with no extra help in school. Please feel free to email me about anything that may be on your mind.
My 4 week old son was diagnosed with agenesis of the sacrum minutes after he was born. He was 4 weeks early and 4lbs 10oz. The neonatologist who was present at the delivery ordered x-rays, which showed this to be true. Nobody said anything about missing part of the spine or anything, I just wish I knew more. We'll be seeing a orthopedic surgeon and urologist in the next few weeks, so we're hoping they'll give us more information. I'm really looking for more information about this.
Hi Juliekayeanderson,
You can find some information about caudal regression syndrome thru the http://www.pullthrunetwork.org/. They have information about the syndrome. Also, you can also google it and find information about it that way.
My daughter is now 7 yrs old and was diagnosed when she was approximately 9 months old. There is no orthopeadic involvement, but has had many issues with her bladder, kidneys and constipation.
There are many different therapies out there and seems more and more are being discovered.
For exmaple, my daughter had a bladder augmentation to help decrease the pressure inside her bladder and to prevent back flow of urine to her kidneys.
I have also found therapies on the internet and then discuss those therapies with my daughter's urologist to see if it something that would help her.
I hope this helps.
hiya i have caudal regression syndrome i was born with little legs one hip and 3 kidneys i am 20 years old now and i am living life to full....if u wanna no any help throw this i dont mind you getting in touch with me
hi my son has caudal regression, and i would like to know how thats goin to affect him in life... i also would loke to know how that affected your height... thank you
hi, swam,
my daughter is 15 months old and it looks like she has the same problems like your daughter. Her spine ends at T11, and we are trying to figure out how much control she has over her bladder and bowel. We are struggling with constipation, and so far we don't have good solution: we tried senna, suppository and now Miralax - checking to see if it is going to work. She is very picky eater, and it is hard to use her diet to to make her stool softer. Do you have any suggestion? Also, her knees are contracted 90 percent, and we are considering surgical way of fixing it. Does anybody have experience with that? She can sit OK, and reach for an objects around her, but she has hard time crawling and getting up from laying on her back, because her knees make it difficult. She has many chalenges, but she is intelligent, beautiful and strong little lady, and we are trying to help her the best we can. Please, respond if you have any suggestions. Thank you
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