Chiari and incontinence problems

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Chiari and incontinence problems

Postby shannon » Tue Feb 02, 2010 11:25 pm

Hi everyone,
I'm new to all this but I'm so excited to talk to people who are going through the same thing as us. Our 6 year old son Owen was just diagnosed with CM and SM. He also has scoliosis ( a 19 and 30 degree "S" curve) which is how doctors discovered his underlying spinal conditions. We are in disbelief that all this is happening to our seemingly healthy first grader. The one thing that is really concerning me is his seemingly more frequent incidents of accidents involving bowel movements. He is having a more and more difficult time getting to the bathroom in time and ends up soiling his pants. The frequency of these occurances has increased (now to 2 or 3 times a week). I brought it up to his spinal surgeon (we're still waiting to see a neurosurgeon) and he thinks there could be a medical cause related to the syrinx. I just don't know what to do in the meantime. I don't want him to be ridiculed by children at school and I hate to see him go through this. Does anyone have any suggestions or advice? I feel like the worst mother ever for punishing him in the past for these "accidents" before knowing about his condition. I'm just at a loss for what to do. If he is just being lazy in getting to the bathroom in time, I don't want to give him an excuse to keep doing it, but I also want to get him the help he needs if he really can't control it. Any ideas??
shannon
 
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Re: Chiari and incontinence problems

Postby lcolangelo » Thu Feb 04, 2010 9:06 am

shannon,
Incontinence of both bowel and urine can defineitly be related to both chiari and cm-- how soon can you get inot a nsg? Where do you live?
lcolangelo
 
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Re: Chiari and incontinence problems

Postby shannon » Thu Feb 04, 2010 6:13 pm

We live in CA and are waiting for a call to book the NS appointment. It should come in the next week acoording to Owen's spine surgeon (who made the referral). I don't know how long it will take to get an actual appointment. I hope it's soon. I'm afraid of permanent damage. He has no other symptoms, though. No headaches, no loss of coordination or memory...then again, those symptoms related to the CM and not the syrinx.
shannon
 
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Re: Chiari and incontinence problems

Postby Lipper5 » Sun Feb 07, 2010 10:55 am

My son was DX at about a 1 1/2. He had decompression surgery just shy of 2 and that helped the falling all the time. Now just shy of 4 he had a shunt placed in his spinal cord to relieve the Syrinx because he was having bowel and bladder accidents out of the blue back in December. Our NS said this will just get increasingly worse if we do not do something soon and could become permanent so we did the surgery. We will not know if it helped for several weeks.
I would try to get into someone sooner than later because it is most likely due to the syrinx. But maybe they will try to fix what caused the syrinx to begin with,which is the Chiari. Our Dr tried that first with us. It did stop his syrinx from growing but did not take it away. So every 6 months we went for an MRI to make sure it wasnt growing. But because symptoms arose we had to do something now. Good luck. Let me know how you make out.

Krista
Mother of 2 children DX with Chiari 1 and one with SM
Lipper5
 
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Re: Chiari and incontinence problems

Postby shannon » Mon Feb 08, 2010 8:22 pm

Thanks Krista. We finally got a call to schedule the appointment so he goes in next Thursday. I hope you start to see improvement with your son soon. I'd really like to hear how it goes. Good luck.
shannon
 
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Re: Chiari and incontinence problems

Postby jlb555 » Sat Feb 20, 2010 10:54 pm

I just wanted to add to your conversation. My daughter is 12 and we do not have a diagnosis yet, but she has a 3 mm herniation, which our neurologist says it not Chiari, but Laura has always had bladder incontinence and still does. Like you I feel bad now for being upset with her in the past over the incontinence. She has the severe headaches, vision problems, tinnitus in her ears, and if not on medication severe nausea, vomiting from the headaches. We are really at a loss as to what to do next. Right now most of her symptoms are controlled by the medication the physician has her on, but the incontinence continues. I just wanted to let you know that you definetly are not alone.
jlb555
 
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Re: Chiari and incontinence problems

Postby shannon » Sat Feb 20, 2010 11:37 pm

Thank you for sharing your story. It's just so sad...my six year old is emabarassed when it happens at school and elementary school children aren't nearly as cruel as middle school. This really affects their self esteem and that's what I worry about. I'm concerned about the medical implications too but I think we have to be concious of the fact that our children are suffering mentally and emotionally as well as medically. I hope that you get answers soon and that she can overcome this. In the meantime, we have to find ways to help minimize the ridicule and embarassment our children face. My approach has been to have open dialogues with teachers, faculty and parents at school. People are less likely to be judgemental and impatient if they have the facts. I also do my very best to build my son's self esteem and focus on the things in his life he does have control over.
He is scheduled to have decompression surgery on March 10th and I'm hoping that it will help with the incontinence. I know that nerve damage does not repair itself but I'm hoping it hasn't gotten to that point. It's important to stay positive. We're the biggest role models for our children and they look to us for how to act and react to situations. Take care...my thoughts are with you.

Shannon
shannon
 
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