Hello everyone...new here. And a question.

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

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Hello everyone...new here. And a question.

Postby chinamarie » Mon May 16, 2011 10:36 am

My name is Jenn and I have an 8 year old who has both CM and SM. He has gone through the first and second decompressions (18 months apart) and as of now is doing well. :) I do have a few questions. Does anyone who has a child with cm/sm deal with bladder and bowel issues? My little guy is on ditropan for the bladder issues, but the bm accidenta are another issue. I just got off the phone with his ped and we are going to make sure he isnt constipated. But I wonder how many other kiddos out there with cm/sm have to deal with this??

Anything you may be able to add would be greatly appreciated. :)

I am looking foward to "meeting" you all. It is going to be nice to have a group of people to talk to that know whats going on, and to have the understanding that you cant find with people who don't deal with cm/sm on a daily basis.

Thanks again.

Jenn
Jenn mom to three beautiful boys.
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Re: Hello everyone...new here. And a question.

Postby jfreema » Sun May 22, 2011 8:19 am

I'm seeing that so far no one has replied. I'm replying so that it will be bumped back up to the top of the posts. I wish you the best and hope you find the help you need for your child.
Jennifer
Pre-Op: SM C2-T4 (2mm C2 to C5, 6 mm C5 to T1, 2 mm T1 to T2, 7 mm T2 to T4), CM 8 mm
PFD surgery May 2010
Post-Op: Syrinx has completely disappeared - no evidence at all!
Surgeon: Dr. John Heiss at the NIH
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Re: Hello everyone...new here. And a question.

Postby chinamarie » Tue May 24, 2011 10:35 am

Thanks Jennifer. I appreciate it.
Jenn mom to three beautiful boys.
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Re: Hello everyone...new here. And a question.

Postby medicpt » Mon May 30, 2011 7:36 pm

Nice to "meet" you Jenn. I have a 4y/o dtr with CM. I also wanted to acknowledge you post. I currently don't have issues with her bowel or bladder and cannot help you specifically, but wish you the best.

wendi2
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Re: Hello everyone...new here. And a question.

Postby denita1414 » Tue Aug 09, 2011 11:24 am

Jenn,
I have a 3 year old who had CM and SM and is not potty trained. I have 4 children and the older 2 were trained before now (they don't have CM/SM as far as we know). Abby has no 'interest' in potty training and I wonder if it's because she has damage to the nerves down there. We aren't sure what is going on yet. Her decompression surgery was in May 2011 and although we have seen some changes in her, it's still frustrating. She can't walk on her own and uses leg braces (afo's). Sometimes she tells me that she needs to go to the toilet so I take her and can see that she does need to have a bowel movement, but she seems to have trouble pushing. There is no mention by her to pee in the toilet, so I'm guessing she can't hold it ....who knows!!
I hope I've helped you some. It's tough dealing with this isn't it? I'm so thankful for this website.

Take Care,
Dee
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Re: Hello everyone...new here. And a question.

Postby nicari » Fri Aug 12, 2011 12:08 am

Hi Jen
My daughter has cm & sm as well and she is 5. She went for about a month and a half w/ tummy troubles and needing the bathroom more frequently. Rushing to the bathroom and a few accidents as well. I have read that this could be a symptom and it could come and go. Not sure if this will work for your guy, but as soon as we tried our daughter on Activia yogurt it cleared her troubles right up. She's more regular and isn't rushing to the bathroom. These could have been symptoms that came and went, but regardless the yogurt has helped.
Hope your guy gets better and better each day.

D
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Re: Hello everyone...new here. And a question.

Postby Lipper5 » Fri Aug 12, 2011 1:43 pm

I have a son that has CM/SM. He had bladder/bowel problems and was on that medicine. It made him so dried out. Once he had the syrinx shunted his bladder problems stopped. He however still has sluggish bowel so takes Miralax everyday or he will back up.
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Re: Hello everyone...new here. And a question.

Postby JenandLuli » Wed Sep 07, 2011 11:31 pm

HI! I don't post here often... and it's been awhile since I was here but here's my experience...

My dd is 5 and has SM (no CM) - 1 in her cervical and 1 in her thorax/lumber area. She had surgery to drain it 1.5 years ago. Before surgery she had been potty trained for over a year. She started to have accidents and they did a urodynamic study and found she had decreased sensation. Basically, her bladder would fill up so full and she had no idea until her body couldn't hold it any more and she would wet herself as she ran to the bathroom.
After surgery, her accidents stopped immediately and stayed away for about 9-12mo. She has been having infrequent accidents again and an MRI showed that they syrinx are larger than they were but not as big as they were before surgery.

ANyway - all this to say that - YES - the syrinx can cause bladder incontinence.

Hope you find the help you need!!!

Jen
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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Re: Hello everyone...new here. And a question.

Postby heymom07 » Wed Nov 16, 2011 12:01 am

Hi ChinaMarie,

We just found out my six year old daughter has cm1 and Syringo. Right now the only symptom she has is bladder and bowel issues. We've worked with a urologist and gastroenterologist for about 2 years with no real change....actually it has just gotten worse. We are awaiting an appointment from Mayos but are wondering if we should seek out another clinic that has chiari specialists.

Have you found anything out about your child since your original post?
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