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

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Postby megan'smom » Tue Sep 29, 2009 9:04 am

I have just found this site and am hoping and praying that someone out there can help me. My 14 y/o daughter has syringeomylia and I am having nothing but problems trying to find a good dr. for her that will do SOMETHING for her pain. I currently take her to the Mayo Clinic in Rochester, but I want the best for her a dr. with experience in this that knows what she is going through, one that will help her. She is getting progressively worse and can't attend school full time--this is another major issue I have. They don't understand the illness and are thinking of putting her on a warning for attendance which in this case means if she misses school they will take legal action against me.

WILL SOMEONE PLEASE HELP ME?? I don't know where to turn anymore I can't stand to see her suffer.
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Postby youngwife » Tue Sep 29, 2009 9:09 am

Hey there!

I am so very sorry that your daughter is suffering so much. My daughter is 15, and she has CM and SM. The CM Zero was diagnosed by Dr. Rosner in NC, but he is having to close his doors, sadly.

I do know of Dr. Stephen Fletcher in Houston, TX that recognizes Chiari Zero and a few others. Maybe Dr. Heffez in Wisconsin??

Have you thought about just taking your daughter out and homeschooling her? IF you would be interested, and need information, I will be happy to do what I can to find it for you.

I hope this is helpful, and I will be in prayer for your daughter!


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 Janice » Tue Sep 29, 2009 10:42 am

You might be able to speak with the administration office about an IEP plan, or similar. There are plans that recognize a child struggling with a chronic illness. These plans protect both the parent, and child, when circumstances related to the chronic illness prevent the child from being a full participant.

Try searching through some of the older posts for plans. Type IEP plan (or 504 plan) in the search box, or even in your web browser for online help. Getting your child under one of these plans might be a starting point in preventing any legal action from being taken. You might ask your childs doctor, s/he might also have information on these plans for you. Unfortunately, I don't remember the other plan but if I come across it, or any information on both, I'll add to this post.

Take care and I wish you the best in working this matter out for your childs best interest.

Edit to add: The other is a 504 plan. The structure of both plans can vary from state to state, so check w/the guidelines for the state you live in. Again, there should be post on both plans and each plan is different so you'll need to determine which plan works best for the benefit of your childs needs.

Do your research, get started w/her school, then work out a plan. As Rebecca mentioned, homeschooling is another option. Due to the childs needs, many parents have begun homeschooling their child due to chronic illness. Many kids require frequent rest, or nap periods, and homeschooling allows for this.
GOD Bless!

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4 (Copy & Paste link into your browser)
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Postby jupes » Tue Sep 29, 2009 11:07 am

Hi and Welcome!

I know others on here have IEP plans for their kids and some choose to home school to better meet their childs needs. Hope you find a plan that works and an understanding Doctor that can help get the pain under control.

Sent you a PM!

14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Postby Lakermom86 » Thu Oct 01, 2009 4:45 pm

I have never posted a reply but have been reading posts for a few weeks now. I saw yours this morning and thought I should send a quick note. You mentioned the Mayo Clinic in Rochester (I am assuming MN?). We live in MN and see Dr. Michael Partington at Gillette Children's. I have a 3 year old who has CM and Syringomyelia (just diagnosed last week) and we are now in the process of scheduling his surgery. We've been seeing Dr. Partington for 2 1/2 years now and he is wonderful...very straight forward, helpful and extremely knowledgable in this area. If you can, give him a try. Good luck~
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Postby Sara » Fri Oct 02, 2009 7:22 am

ASAP will hold a free telephone seminar on accomodations and modifications for IEP at the school. Sign up here:
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