New Here with some questions

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

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New Here with some questions

Postby Bear » Wed Mar 19, 2008 1:00 pm

Hi, I'm new to the boards. My 6 year old daughter was diagnosed with a chiari malformation. We have been told by one neurosurgeon she has a significant chiari and one has said it is mild. She suffers from very weak fine motor and weak large motor skills. Her speech is severely delayed. We have noticed in the past 3 weeks her head and neck pain is getting far more agressive than it has ever been. She started with head and neck pain in the summer of 2007, but was diagnosed about three months ago. She also complains of her stomach a lot which the doctors say is probably from her taking motrin and tylenol for pain. She did have a full spinal mri. No syrinx as of January. The doctor said thats not to say one will never show up. So, my question to all of you is do the symtoms you or your loved ones all have come and go, and does the agression of the symptoms come and go? Thanks so much for any info you can provide.
Erin
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Postby Janice » Wed Mar 19, 2008 3:29 pm

Hi Erin and Welcome,

I'm really sorry to hear that your little one is struggling right now. Yes, it is possible for some or all symptoms to come and go and to be more aggressive for periods at a time.

Keep the doctor informed and make sure she lets you know when she's having trouble.

Your family is in my thoughts and prayers.

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Postby youngwife » Wed Mar 19, 2008 4:22 pm

Hello, and welcome to ASAP!

My daughter is thirteen, and had surgery in October of last year. She is very much improved now that she has had her surgery.

Her symptoms just progressively got worse, not better. But, each patient is different.

I am very sorry that your daughter is having to deal with such a painful condition at such a tender age. :(
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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Postby Bear » Wed Mar 19, 2008 8:47 pm

Thanks so much for you replies. Today was actually her first good day in about a week. We are new to chiari and are learning everyday. Her O.T. does seem concerned about how she will make it through a full day of school next year as she is in half day kindergarten this year and isn't holding up too well through the day.
Erin
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Postby Janice » Thu Mar 20, 2008 8:49 am

Good Morning Erin,

You should probably speak to someone at the school, now, about any programs they may have in place for children with disabilities. I don't have small children, mine are adults now but I have heard parents mention programs like 504 and there's another I can't remember right now.

Once a program is in place, the teachers and faculty assist in the childs well-being while they're attending school (something like that). Like ensuring they have meds or break periods when needed and more.

If you set it up by the end of the school year it should be in place for first grade. You should check into it to help ease your concerns.

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Postby Bear » Thu Mar 20, 2008 1:30 pm

Hi Janice, we do have an I.E.P. in place for our daughter. She has been receiving speech services since December and just started O.T. a couple of weeks ago. We aren't sure if her symptoms are getting worse because certain things trigger the neck pain, or if it is her condition is changing. I do have a call into her neurosurgeon about this. Sometimes I think because she is only 6 she has a hard time communicating her pain to us. She doesn't know what buring, stabbing, or throbbing means. The I.E.P. that is in place now is for next school year too. The O.T. was telling me she is having such a hard time getting through a half of school day she worries about how a full day is going to affect her next year. Thanks for your advice and kind words.
Erin
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Postby Janice » Thu Mar 20, 2008 1:40 pm

Hi Erin,

You're right, at 6 it is very hard to know what they are experiencing because they are not fully developed in communication yet. I have 2 grandchildren, age 5 (1 will be 6 next month). We have a terrible time trying to find out what's wrong, or what hurts, when they don't feel well.

I wish there was a way this could be less complicated for you. I do understand and am sending up prayers.

Have you spoken to the therapist about finding a way to help in explaining to her, or understanding what she's saying, about pain? Just a thought. I know it can be frustrating for both of you.

Take care and I pray you are able to find a way to help your daughter.
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
Janice
 
Posts: 4412
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Postby Bear » Mon Mar 24, 2008 2:22 am

Hi Janice, I didn't give a therapist a thought until you mentioned it. The school nurse did give me a pain scale 1-10 with the smiley faces that we are using now. I'm keeping a log of her complaints and her ratings on the scale. I'm not sure she understands the scale 100%. We are seeing the neurologist about her pain the first week in April. She complains almost daily of her stomach hurting. At first I thought it was from the Motrin and Tylenol. But, now she is complaining of her stomach hurting even on the days she doesn't get the Motrin and Tylenol. The stomach hurting and the neck pains seem to be getting worse. Hopefully the neurologist will be able to help us out.
Erin
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