2.5 year old with SM...Help please

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

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2.5 year old with SM...Help please

Postby jen_illeen » Thu Jul 19, 2007 3:32 pm

This has been the worst week of my life. When my daughter began standing and trying to walk, we noticed that she walked on her toes. She was referred to a pediatric physical therapist at around 9 mo. and underwent serial casting. She started walking at 14 mo., we thought all was fine until about 6 mo. ago she started walking on her toes again, falling a lot etc. We went back to physical therapy and they recommended a NR eval. The NR ordered an MRI of her brain and when I told him that she had a sacral dimple, of her spine too.

We went for the MRI on Monday and instead of the 1 hour they said it would take, it took 3. I knew something was really wrong. The next day we got the call from the NR. She has a "large" syrinx and was being referred to Dr. Raffel at Mayo Clinic.

Today I picked up the MRI on a DVD and my husband and I looked at the report and the images. Her syrinx extends from L1 to T4.

Devastation seems so inadequate to describe how I'm feeling. She is a wonderful, beautiful, smart child, the center of our whole world and the absolute light of my life. I would gladly die and give her my spinal cord if I could. I feel like my world is crashing down around me. I feel like I'm in a nightmare. All I can do is think the worst. I feel lost. I don't know where to begin with doctors, hospitals, treatments. I've read a lot online, but I feel overwhelmed. I feel like it's my fault. I just want to cry all of the time and I'm sick to my stomach constantly. I'm in my last year of getting a graduate degree and I can't imagine returning to school in the fall and trying to care about writing papers, meeting with clients (I'm studying to be a psychotherapist), etc.

Since Monday night, each night when she goes to bed I don't want to leave her side. When I think of what she will have to go through, I feel like I can't bear it.

Any support/advice is needed desperately. I've also contacted Dr. Frim in Chicago.

Thank you,
jen_illeen
 

Your daughter

Postby Dawn Nutt » Thu Oct 11, 2007 7:45 pm

First, let me be the first to say I can so relate to what you are feeling. My Son was dx with SM about a yr and 1/2 ago and I will never forget the day I too learned of what I had already suspected. I feel like someone literally ripped my heart out. My son tripped quite often since he was 2 and I just insisted to his PCP something was wrong. In May 06 we had a MRI and we learned of his syrinx. In addition, we learned he had a tethered spinal cord. We had surgery at U of Chic in Nov of 06 to detether his cord and he has been pretty good since. His syrinx is at c3-4 and L1 and is 6mm at T12 level. He experienced incontinence at bedtime at the age of 5 and thats when I began to get very worried. My advice to you is get educated. If it weren't for this website who knows where my child would be at healthwise. We have had bladder studies, therapy and we also see Dr Frim who is wonderful. I trust him with my life. My son is very athletic and a very intelligent little guy. He has MRIs every 6 mths so we can monitor his syrinx and measure it. He is such a trooper and we are so proud of how far he has came. So far, so good. Keep all of her Medical records and get films for your own reference. You are your childs only voice.
Dawn Nutt
 

YOUR CHILD IS A STRONG FIGHTER

Postby kosterkids » Sun Oct 21, 2007 8:58 pm

MY BABY HAS HAD THREE FACIAL CRANIAL RECONSTUCTIVE SURGERIES, A CHIARI SURGERY AND FOUR OTHER SURGERIES. I WAS SO SO DEVISTATED WHEN SHE WAS BORN WITH ALL THESE PROBLEMS AND COULD NOT IMAGINE HOW SHE COULD GO THROUGH ALL THIS. WELL LET ME TELL YOU SHE IS SO STRONG WITH EVERY SURGERY SHE HAS GONE HOME WITHIN A FEW DAYS AFTER SHE IS AMAZING IT IS LIKE NOTHING EVER HAPPENED I REALLY THINK ALL THIS HAS BEEN HARDER ON US THAN HER. SHE IS THE LIGHT OF MY LIFE EVEN THOUGH I HAVE THREE OTHER LIGHTS OF MY LIFE AND ONE MORE ON THE WAY. I KNOW IT SEEMS LIKE THE WORLD IS GOING TO END BUT JUST BE STRONG FOR YOUR BABY CAUSE IT IS ALMOST LIKE THEY ARE STRONG FOR US AND KEEP US GOING. ANY QUESTIONS PLEASE CONTACT ME.. GOOD LUCK AND IF YOU LIVE IN GA I KNOW A GREAT NURO SURGEON
kosterkids
 


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