New Diagnoses

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

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New Diagnoses

Postby Rosellen » Fri Mar 28, 2008 3:50 pm

Hi, I'm hoping I could get some information regarding my 8 yr old son, Nicholas. He has been diagnosed with having a boderline Chiari Malformation. Dr. thinks he may have tethered cord. The pressure in his brain is causing his pituitary gland to be flat like a pancake. When Nicky was 5 he suffered from tortecolis for 2 weeks. Things started to get hard for Nicky in school, he couldn't concentrate & focus. He became very moody, irriateable & has sleep issues. Over the course of several years Dr's said he had ADD, PDD, Learning disabilities, tried different meds, nothing helped Nicky, his headaches just got worse. My son is suffering & I wish I could have some insight.

If any would like to talk please contact me, any advice would help

Thank you
Rosellen
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Postby Beach4me » Fri Mar 28, 2008 7:04 pm

I am so sorry to hear about your son and the struggle you guys are going thru. But perhaps help and relief are just around the corner.

My 12 dd was diagnosised in Jan (CM1). We went to the Chiari specialist a couple of weeks ago. She also has ADD. Her ability to concentrate and focus have gotten significantly worse in the past 1.5 yrs. And really so in the past six months as her symptoms have gotten a lot worse. Last year, ADD meds stopped working unless she was "drugged". No improvement in school is worth that. They had been working at the very min dose for the previous 3 yrs.

She is scheduled for surgery in June. I am very interested to see how she does with the ADD symptoms after surgery. How much is ADD and how much is feeling horrible most of the time?

Keep us informed. You will find this is an awesome group of people who are very supportive when no one seems to understand.
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Postby Rosellen » Sat Mar 29, 2008 8:36 am

I am sorry to hear about your daughter. Is this a new diagnoses for you also? I hope everything goes well with her surgery.

Thank you for the advice.
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welcome

Postby Sara » Sun Mar 30, 2008 8:55 am

Hi-
My daughter also has tethered cord, sm, acquired Chiari, intracranial hypertension and hydrocephalous. She has ADD and has been through many meds before we found one that would help. She literally went from failing to getting straight A's in school!

What state do you live in? Are you seeing a neurosurgeon who specializes in the disorder and is surgery being considered?
Sara
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Postby Rosellen » Sun Mar 30, 2008 6:06 pm

I live in New York. Surgery is being considered, but the Dr. wants to wait for my son to have a growth spurt. Meanwhile Nicky is having lower back pain, headaches & now he is having pain behind his right eye.

Does your daughter need surgery? Or has she had surgery? I'm glad she is doing well in school. What medication is she taking now?
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