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looking for options/answers for my son

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Unread 08-01-2012, 09:35 PM   #1
MelissaG+2
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Default looking for options/answers for my son

Hello,

I am new to this, I am researching to find out info and answers for my 12yr old son, We found out he has caudal regression, and tethered spine at the age of one.

We have been to the doctor many many times, not really getting any answers or meds to help. We then were referred to a children's hospital that has neurologists. More and more tests were done along with meds, still nothing. i have been trying to find out as much as I can to help my son. A few weeks ago my son developed stones in his bladder, we went to the children's hospital, I asked the doc questions and he could not answer them.

Alarming to me, my mind started going, he asked if I have spoke to a neurosurgeon and I said no, asking him why I was never referred. He said nothing. finding out my child had these stones in his bladder for over a year I was irate, The doc looked back on previous ultra sounds and saw them, How could they have missed them? Steaming more the doctor was pushing for a surgery that had more cons than pros.... so I need help, any advice, info, doctors, medications that work please let me know.

My son has a abnormal bladder, a normal 12yr old can hold 75cc of urine, he can't, he also has troubles with constipation, his hips are small and has a very small buttocks. If anyone thinks this may be different or mis dignoised please tell I will be all ears.


Thank you so much
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Unread 08-02-2012, 09:20 PM   #2
MelissaG+2
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Hello Everyone,

I had giving a brief description about what is going on with my son, it's a long story, but I am hoping that some one will shine light my way. I have so many questions and not really getting answers.

I am not sure if anyone else is going through what I am, please if any knowledge I am praying you will share. I want to find info out before my son is ruined, by getting mis-treated ( with meds or surgery that is not neccesary). I hope I didn't come off the wrong way to anyone, if i did I sincerely apologize.
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Unread 08-03-2012, 12:15 AM   #3
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I hope you can find some help and answers soon for your son.
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Unread 08-10-2012, 12:55 PM   #4
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I'm sorry this is not someting I have every heard of.

Hoping you can get some answers soon.

Donna
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Unread 08-12-2012, 05:25 PM   #5
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When you said tethered cord I think of spina bifida. There are sites that can give you alot of information about this and you can check yourself for the outward signs of spina bifida. I was born with this and was not diagonised until I reached adulthood. Sometimes there are not outward signs to find but I would check it out. Don't freak out on me, sometimes there are other causes and in children I hear it is a procedure that has great results. Hope you find answers, you might need a second or even third opinion...God Bless
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Unread 08-13-2012, 06:06 PM   #6
MelissaG+2
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Quote:
Originally Posted by Silver View Post
When you said tethered cord I think of spina bifida. There are sites that can give you alot of information about this and you can check yourself for the outward signs of spina bifida. I was born with this and was not diagonised until I reached adulthood. Sometimes there are not outward signs to find but I would check it out. Don't freak out on me, sometimes there are other causes and in children I hear it is a procedure that has great results. Hope you find answers, you might need a second or even third opinion...God Bless
Silver
Hi Silver,

yes he was diganoised with caudral regression, I have never heard of that, I did some chking out and i guess it does exsist, do i know for sure? no i do not, have I met other ppl with it no i haven't, so I have been in question for many years, I thought is may be what you have too, I will have to chk them out again. Why would i freak out on you? I have no reason, I am open for any ideas and opinions. Thank you very much.
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Unread 12-17-2012, 09:20 PM   #7
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Melissa

Caudal Regression Syndrome does exist and it's also known as sacral agenesis or hypoplasia of the sacrum. It's a congenital abnormality of the spine and is found at a rate of 1 in 25000 births.

Your sons problems sound as though they are at the less serious end of the spectrum since it can cause double incontinence, colostomy, serious deformity of hips and legs, amputation of legs, complete paralysis and so on. I am not trying to belittle your sons issues, only put them into context a bit. Its not the same as spina bifida. I assume the spinal cord tethering is at the same point in the lower spine as the caudal deformity?

Bladder stones are common in people with bladder damage or urine flow issues. I know you are upset about the delay in identifying his stones but now that you know he is going to have a tendency towards developing them, perhaps you can work with the doctors to manage this better. Diet and fluid intake are important factors as is the specific bladder abnormality he has. It may be that it's best to leave things as they are and manage him to minimise stone production, then deal with them as they arise when they are small. Alternatively there may be other interventions that could help such as self catheterising or other in dwelling catheterisation or other bladder surgeries. If his constipation can be managed with fluid, laxatives and diet that may be enough otherwise alternatives may be out there such as using suppositories and manual stimulation to get his bowels into a regular movement pattern.

I think you might want to look for a proper evaluation of his biomechanical issues from his hips down to identify is there are any other mechanical problems that could be assisted with physiotherapy or braces for example - I guess this may help to prevent problems associated with biomechanical defects later in his life. The fact that his hips are small may be of no great significance itself.

The spinal cord tethering is the greatest potential issue. If it is damaged in the future as a result of the tethering, your son could lose more function - in the same way as a patient does when they have a spinal injury at a lower point in their spine. I think I would be asking for a full assessment of the current state of the tethering along with his future prognosis, especially as he physically grows over the next 10 years. Again, there may be surgical interventions that can be done now which may reduce any future risk. Alternatively, it may be that he has little future risk of complications.

I hope that helps.
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Unread 12-29-2012, 08:27 PM   #8
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Thank you for helping her Neurochic.

I learned a lot from what you said.

Donna
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Unread 01-03-2013, 06:39 PM   #9
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Glad it was a help. When the original posters don't come back and comment its always hard to know if the info was useful or not.
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