Great News and ?'s

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

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Great News and ?'s

Postby 3kidssane » Wed Feb 24, 2010 9:49 pm

We finally got an appointment with a NS. The Ped,'s office hired a new nurse and she got it done imediatly. Her son has CP so she was sympathetic. Hailey's app. is March 8th. At this point I don't even know what to expect, I just hope we can pull this all together and get the info. we need.

Now forthe ?. Hailey has been having headaches everyday and when we went to the Nuerologist they said that it was just migrains. Well, we went to her Ped. and he said that he did not know much about CM but that we obviously needed to treat the headaches. So he put her on a strong Anahystamine. It helped some, but not completely and she became very emotional all of the time. It effected her focus and we had a hard time getting through school days. When i called the Ped. he said that the side effects were normal because it makes her drowsy. He wasn't concerned in fact, he said that if the headaches were not going away completely I could give it to her three times a day. Why would I want to put her through that? I'm at a loss. Do any of your children suffer from headache? How do you treat them?
Mother of: DD,8 with Cm 1 protruding tonsils 10mm and SM with Syrinx from t5-t7, 4 mm in depth and 5 mm in width, DC'd 2x 6/2010, DS, 4 with enviromental allergies, food allergies and autism,DS 2, DS 5 months.
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Joined: Tue Dec 29, 2009 12:56 am

Re: Great News and ?'s

Postby memom » Wed Feb 24, 2010 11:19 pm

I am so sorry to hear your daughter is suffering. My daughter suffers from headaches noise & light sensitivity and more. She was having a difficult time with school, she could not focus and eventually became depressed about her whole situation. We were not comfortable giving her medicine everytime she had a headache. Knowing the CM and SM can be life long issues, and our daughter is so young, we have been trying alternatives to oral medication. If the pain is really severe (scale 7-10) we treat with motrin. Some of the other ways we are working through this have been too:

Take her out of classroom for the time being to reduce stress. The school district has provided her with a teacher 5 hours a week in our home (hospital-home bound program). The aniexty of wondering when the next headache or sensitivity problem was going to start made her so emotional. It was difficult for school staff to understand her problems and in many cases, they did not believe she was in pain. "I heard "do you think she is using this as an excuse not to do her work?" too many times. She qualified for this because she was officially diagnosed with CM. Our ped. signed off on the necessary school forms and we are very happy with this arrangement at this time.

At home we practice music therapy - she remains quiet and listens to her favorite music to help take her mind off the pain.
I read to her as she rests in a comfortable position. We may practice art therapry if she is up for it. It is all designed to take her mind off the pain.

By reducing the amount of stress in her life she is a much happier person. Here anxiety is better, she is calm. We participate in Girl Scouts and make sure she gets plenty of time at the park with other kids when she feels well. I do not know how long this will work, but so far so good.

We love our NS. He gave us some wonderful advice... he said to find out what your child likes and makes sure they get to do it. Do not make them fit into a standard shoe box. CM and SM kids are special and many times they need to be treated that way. I hope you are seeing a CM/SM expert NS for your daughter. If not, please find one - they can make all the difference in the world to you and your family. I hope this helps. Let us know how things go and good luck.

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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Joined: Fri Aug 07, 2009 5:25 pm

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