worried

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

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worried

Postby kbaesel » Sun Aug 16, 2009 9:34 pm

My daughter is 6 years old and has SM with syrinx from T3 to L2. She has had stomach pain since lat september. It just keeps getting worse, I have tried Tylenol and different types of meds for tummy aches, nothing seems to help. The Dr. has done a CT and sonogram and nothing shows up. After dealing with this for just under a year. I finally have gotten tired of this and we are going to Mayo Clinic in MN at the first of next month. I have read that stomach aches can go along with SM. Does anyone else;s kids have this problem? My daughter usually is so happy all the time and this is taking a toll on her. She is not as perky and happy as she was last summer. The Dr. visits have been a lot and the pain is a lot for any child to deal with. Does SM really cause stomach aches like this?
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Re: worried

Postby lttutrow » Sun Aug 16, 2009 9:51 pm

I'm not sure what is typical for SM, but I do know my son has stomach pain/nausea a lot. He has both a CM and SM, my daughter just has a CM and does not have the stomach issues. He also battles chronic constipation, and we've found that when his stomach is bothering him the most, it's often because of constipation. He is not the kind of kid that can usually sit down and eat what would be considered a full meal, rather he eats several small amounts through the day. Some days he just has what he calls, "not good food days", where he doesn't want to eat much at all. Something may sound good, he eats a bite, and puts it in the fridge.
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Re: worried

Postby SamuelsMom » Sun Aug 16, 2009 10:09 pm

I hear you loud and clear. I am not implying that your situation is the same as mine, but our whole issue started with stomach pain. I am not familiar with sm causing stomach pain. My son was misdiagnosed for probably 6mth. We were told he had a stomach bug, told he might have Crohns, Coloitis. Scans --x-ray, ultrasound, CT were "normal". (When I read the scans it didn't sound so normal). Spent the night at the hospital, referred to GI, blah, blah, blah, I begged them to further explore his appendix, to finally have his appendix rupture. I could write a book. Then it was like everyone was looking at me like why didn't you bring him in earlier. His stomach pain was not typical, but he was in pain on/off, came home from school alot. His pains were like contractions. When they were scanning my sons stomach that is when they incidentally picked up his syrinx. After Sam's appendectomy, all stomach issues resolved. When we had the diagnosis of the syrinx and unsure of the stomach pain I researched wondering if the two were related and came up with little correlation. Please don't think that I am saying its your childs appendix, but be sure to rule out everything, before chalking it up to the syrinx. I will be curious to hear how this all turns out for you. How does your daughter explain her pain? One more question, do you know the cause of your daughters sm?
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Re: worried

Postby kbaesel » Sun Aug 16, 2009 10:43 pm

They have know idea what has caused her SM. Back when she got diagnosed with SM she was having back and stomach pain. They first thought that it was her appendix and ruled it out at that time. She was transferred to a near by children's hospital where they did more intense test and an MRI and discovered the SM. It is just frustrating watching her go through this. She does not have problems with constipation of going to often.
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Re: worried

Postby kbaesel » Sun Aug 16, 2009 10:43 pm

They have know idea what has caused her SM. Back when she got diagnosed with SM she was having back and stomach pain. They first thought that it was her appendix and ruled it out at that time. She was transferred to a near by children's hospital where they did more intense test and an MRI and discovered the SM. It is just frustrating watching her go through this. She does not have problems with constipation of going to often.
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Re: worried

Postby jupes » Sun Aug 16, 2009 11:44 pm

Hugs and prayers to you and your daughter and I hope you find answers soon! Like mentioned in the previous posts you can't assume her stomach issues are from the syrinx until all other possibilities are ruled out. I too have read that it is common for small children with CM/SM to have stomach complaints.

My 13 yr old daughter with the CM/SM (Diagnosed 1 1/2 yrs ago) has had stomach complaints since age 5 yrs old and thought to be R/T constipation. Now that she is older and better able to explain her symptoms it seems like some of the stomach discomfort is more of a "motion sickness" type feeling and is worse on days when her other symptoms are acting up.

My youngest ( 5 yrs old,never diagnosed with CM or SM) has had big problems with stomach aches and has gone through testing to r/o many gastrointestinal problems. She was diagnosed with reflux and her symptoms have improved after being on Zantac for 6 mos. She also had issues with constipation which has improved with daily miralax. Since there is a chance this could be genetic I was worried at first that her stomach complaints could be r/t CM/SM and if things continued I would have had her checked for this.

I hope your daughter is being followed closely by a recommended CM/SM expert with periodic MRI's/Neuro evaluations ect. Have all causes have been ruled out for sure? Ideopathic is rare and my daughter's syrinx was first thought to be this. I know Mayo is an excellent hospital for most problems but I have heard others on here say that they are not as knowledgeable about CM/SM as other experts. If all GI problems are ruled out you may want to consider contacting her NS or another CM/SM expert to see if they feel the stomach issues are from the SM and they could give suggestion for some form of pain management. My daughter's NS prescribes different pain medication but will also refer to a pain management specialist if needed.

Good luck and keep us updated!

Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Re: worried

Postby youngwife » Mon Aug 17, 2009 1:33 am

I am currently dealing with stomach pain attacks in my son. He is nine, and at this age many times it is assumed to be behavioral. Especially since he is the only boy of six. :roll:

It is frustrating because so far, no one has been able to help us, other than to rule out appendicitis.

I do not yet know if he has SM or CM. He does also have headaches, but they are not in conjunction with his stomach pain. My husband has also had life long stomach issues, so there really is no telling what could be the cause. But, I am not 100% sure we'll ever really know. :|

Sorry I can't help you more!
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Re: worried

Postby lttutrow » Mon Aug 17, 2009 9:15 am

You mention he has headaches as well, did you know that in children especially, they can have stomach migraines? I forgot, but when Keegan was being seen by a NL for "migraines" (back when the NL thought his 10mm CM was nothing...) she told us that this was the likely cause of his stomach pain.
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Re: worried

Postby megan'smom » Tue Sep 29, 2009 9:15 am

I take my daughter to pediatric neurology at the Mayo too. She sees dr. Kotogal, he is very good but I wonder if he is enough. She has an appt with him on Oct 30--again. I am currently asking for help as well in trying to find a dr. with experience in SM and peds. You are right about the child not being a child. I have gone through the same with my daughter for the past 3 yrs. She went from an energetic happy kid to someone that is in constant pain with depression. None of the meds work for her pain. It kills me to watch her deteriorate. She can't go to school like she used to, has given up all of the sports and outdoor activities that she loves. She's like an 80 year old just struggling to get out of bed. She too has had problems with stomach aches and bladder functions as well as bowl movements, severe weakness, chronic status migraine, numbness and tingling in her feet, severe reactions in her feet and hands to temp changes. The list goes on and on. The worst part is seeing the pain on her face and me not being able to do anything to help her.

My prayers are with you I hope we both find some help for our childs sake.
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