Newly diagnosed and so confused...

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

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Newly diagnosed and so confused...

Postby johacas » Tue Mar 02, 2010 8:33 pm

My daughter was diagnosed with a Chiari 1 malformation a few weeks ago. We saw a neurosurgeon at CHOP and he gave us our options - watch and wait, surgery, or get a second opinion. We are going to Hershey next Tuesday for a second opinion (because I don't know what else to do at this point), but are so confused as to what is happening and don't really know which way to turn. She started with leg pain last spring...she would feel weak and tire easily. By November, she was having headaches, was very weak and getting p.t. (doctor's thought she might have a white matter disease as her brother does). By Christmas, she had consistent headaches and laid around a great deal. Nothing was helping, so we took her to see the neurologist where she had her MRI and was diagnosed. Her headaches are so bad now that she isn't even making two hours in school. She's very sad and seems very disconnected. She moans in her sleep and is extremely tired during the day. She told me today that her homework didn't make any sense - her brain wasn't working, she said. I am so scared and confused and unsure of what I should be doing. I don't even know what to do about school as she is never there. If anyone is able to give some guidance or anything, I would greatly appreciate it!
Take care,
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Re: Newly diagnosed and so confused...

Postby lttutrow » Tue Mar 02, 2010 9:05 pm

As far as school goes, meet with them and ask for either an IEP or 504 to accommodate her needs. If she misses a day of school, or a part of the day, that can be waived so that it doesn't count against her attendance or the school's. They also can offer things like rest times, or if accommodations to her material need to be made or tried, they can do that. I encourage you to ask for an ot to participate to see if things can be modified that may improve specific things that cause her pain. For example, my kids have found that if they have to look down to write or read for very long, it makes it worse.
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Re: Newly diagnosed and so confused...

Postby johacas » Tue Mar 02, 2010 9:47 pm

I forgot to mention that my daughter just turned eleven - just so everyone has an idea of her age and abilities.
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Re: Newly diagnosed and so confused...

Postby memom » Tue Mar 02, 2010 10:07 pm

Hi Brianna

I am so sorry to hear about your daughter. My daughter also suffers from CM and SM. She has very similar symptoms. We went to the school and got a 504 plan to try an accommodate her needs. She was still unable to concentrate in class and in pain so often it really began to take a toll on her. She became very depressed! Her symptoms continued to progress so we went to an Individual Education Plan (IEP). We placed her on the "hospital/homebound" program at her public school. Her pcp signed off on the paper work and the school sends a teacher to our house 5 hours a week. This relieved a lot of her stress and GREATLY improved her depression. She is back to being a happy kid even though she has many painful days.

We work hard to make sure our daughter gets plenty of "social" time. She is a girl scout and we spend ALOT of time at the local parks with other kids. We practice art and music therapy to help with pain management. She does not feel like she is missing out on anything and best of all, she is not taking any anti-depressants.

I hope that you are able to find a CM and SM expert for your daughter. Seeing a NS who has lots of experience will greatly benefit your entire family. Please keep us posted on her progress. Best wishes

Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: Newly diagnosed and so confused...

Postby lcolangelo » Wed Mar 03, 2010 9:52 am

I'm so sorry to hear of your daughter's pain-- it's the wort thing in the world to watch. Just my opionion-- but surgery may help her. Yes it's a scary thing-- especially for your baby-- but it's a farily safe procedure and Does help a lot of children. I know it's a tough decision-- but just know that kids do bounce back pretty quickly, and it truly might change her life. I'll keep you in my prayers-- good luck.
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