Making sense of it all...

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

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Making sense of it all...

Postby HCarey » Wed Jul 07, 2010 10:18 am

I am in Raleigh NC. I am new to all of this. I have a son who is turning 6 in October who has a thoracic syrinx from T2-12. I need to know how to handle all this and what to expect. Has anyone any advice on what medical professionals to seek? I have been taking my son to a neurologist to monitor through MRIs but he doesn't provide a whole lot of detail of how to live with all of this...where it is going and what to expect. I am feeling like there has to be more info. out there and would love to talk to some drs. who have more experience with this particular thing. I am not sure if sports are okay and which ones are good or bad. Is it all trial and error with this at this point? Do you tell the teachers and staff at school? What do I tell the gym teacher? What do I tell my child in terms of protecting himself and living normally? Any advice is welcome. Tell me I am overprotective or worrying too much or not enough..I need all advice and information! I am not terribly savvy on the computer and with two boys under 6, you can imagine my time. I know that I saw a couple of drs. out of Duke will be at the conference in TX. Unfortunately, the recession really changed our financial status so I can't afford to go with my family of four...but if anyone can direct me to someone at Duke that has experience I will take it!
I know I am rambling but I have so many questions. Has anyone tried to manage pain through aquatherapy and physical therapy for kids? My son LOVES the water. We plan on heading down to Life Rolls On's They WIll Surf Again in Wilmington on August 7th. Is this injury considered a disability? I know it is a spinal cord injury but I don't know if I am filling out papers wrong at the school etc. We chose a smaller private school setting so I could be more involved in his education and because we thought that it may be a little more manageable if he needs assistance as he grows. He wrote his name four times a few months ago practicing excitedly for school and he couldn't hold his pencil to finish the last letter. A perfectionist in a small body, the fact that it was unfinished was his biggest worry while my mind raced to "what is this?!" His dr. moved his normal checkup MRI from October to July after hearing this (and I am sure the overwhelming mommy panic in my voice!). How do I prepare the teacher for this kind of thing without making him overly concerned about it? Ugh..okay...that's enough for now! ha ha ha...
HCarey
 
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Re: Making sense of it all...

Postby BeThereMom » Thu Jul 08, 2010 9:53 am

We live in Asheville, NC and travel to Duke to see Dr. Fuchs there, who did my daughter's permanent shunt on 12-22-09. Her syrinx collapsed and her pain/numbness went away thank God until mid May this year. No numbness now, but still trying to get the meds straight for her pain. This is a great website for answers, although you can certainly research more on the internet late at night like I do after my 3 kids go to bed. I teach at a public school and I will be creating a 504 plan for my daughter next month as school starts or you can do it before school starts. This is a plan that teachers and the school must follow to help your child have an equal education. It is illegal for them not to follow it. For instance, my daughter can't run for long periods, so in gym, the mile run for her will be excluded. Also, last year with the doc's note, she was totally excluded from gym as needed. There are many other thing to add as they pertain to each unique situation. I will make sure attendance doesn't count against her on her bad pain days when she can't go to school and so on.
There is a discussion group on this board for disability/insurance answers too. I feel for you, been there, and still there, you can private message me and I will give my phone number if that makes it easier for you. Take care, and you can never worry too much for your child, we are their biggest fans, their advocates and protectors. Always remember that. ~ Cindy
Cindy
Mom of 11yr. old daughter, Elaina
idiopathic syringomyelia, large syrinx at t5-t7
permanent shunt since 12-22-09
My girl is one tough cookie, people believe her smile through the pain.
BeThereMom
 
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Re: Making sense of it all...

Postby perservance » Sat Jul 31, 2010 1:43 am

Thank you so much for posting. I am walking in your shoes tonight with all the same questions and fears for my 6 year old son. He was just dx Wed with SM totaly covering his throacic area. Saw Pediatric NS Thurs and he stated the diameter was within normal variance and he was not concerned with the length of the syrnix. My son has pain throughout his extremities and tongue. NS claims this is not SM related. Released him from any restrictions. I am so hesitant.
We live in AL- have you now located a Pediatric NS you can trust? We are needing a second opinion.
Also have you pursued the 504 paperwork? Do you need the MD to order this? Thanks for your help. I sure need a place to start to advocate for my son.
perservance
 
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Re: Making sense of it all...

Postby Sue » Sat Aug 07, 2010 7:38 am

So sorry I just logged on and saw your message - hopefully I can help! Our family lives in Hillsborough, NC. Our daughter's peds. neurosurgeon is also Dr. Herbert Fuchs at Duke. Her neurologist is Dr. John Wooten at Raleigh Neurology. Dr. Fuchs recommended Dr. Wooten. We were floundering until we found Dr. Wooten. We had visited with child neurologists at UNC but always left feeling more confused that when we arrived. Dr. Wooten changed everything for us. His down to earth demeanor and practical applications helped us to quickly move from dazed and confused to "Okay, this is how you live with a syrinx". Our daughter was diagnosed at age 7 and just turned 12. The first few months were the most frightening, exhausting, and confusing of our lives. Hands down, Dr. Wooten gave us the information and the care needed to begin moving forward. We still feel the same about him today!

Would be happy to e-mail privately or speak by telephone if your would find it helpful. I so remember being where you are now.....
Sue
 
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Re: Making sense of it all...

Postby perservance » Mon Nov 22, 2010 9:22 pm

Dear Sue,

Thank you so much for writing back. I'm sorry that it has taken me this long to get back to you. Seems like life has been dragging yet when I wake up from this medical mental fog, it is almost Christmas. We found a NS @ Vandy- Dr. Tulipan. He is willing to take Joshua as a patient and monitor his syrnix. He goes back in Jan for another MRI. Right now surgery is not needed, we are grateful. We are just trying to find ways to cope with symptoms that fluctuate daily/weekly. I have found that I have had to slow down and not expect an instant cure all, even though I'm sure every mom desires one. I wanted to thank you for your encouragement. I hope this note finds your daughter doing well. Have a wonderful Thanksgiving!
perservance
 
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Re: Making sense of it all...

Postby DMimsy » Sat Nov 27, 2010 8:26 am

Ok.. I need some big time help and as I read in earlier posts I am in the same boat as the person who is in a mental medical fog. my 6 yr old daughter was diagnosed the day before Thanksgiving 2010 (so this is all VERY fresh) with syringohydromyelia. We had the MRI at 1pm just this Wed. and got a call at 6pm that same night from the pediatrician of her diagnosis and that it is a 1/2 and inch in diameter running from C5-T11 and that she will require immediate surgery and to find a Neurosurgeon with experience in this and that was all he said.. Wow!!! really.. who does that??? time to find a new pediatrician.. he gave no assistance what so ever..

I am at a loss as to where to go and who to contact.. I have spent countless hours (now since I find all of this out) on the internet to try and educate myself as well as look for Neurosurgeons. I have found a couple of guys in Austin, Tx. possibly one at Duke and some at UCLA. But with this being a Holiday week everyone is on vacation or offices are closed so this is VERY frustrating to try and do right now.

Any help with all of this would greatly appreciated. Also I am aware of such a thing as the 504 plan and need to start the process of doing that. I have alerted the school nurse and her 1st grade teacher that I need to start a 504 and understand the basics of it, but would love to speak about that to.

Also what is all the talk about disability? does a 6 yr. old need to file for something like that??? so confused.. Please help me!!!! I'm desperate here!!! please email me at darci.m.mims@gsk.com and then we can exchange phone numbers..

Thank you to whomever responds to my pleas.. I will be forever indebted to you!!!!
DMimsy
 
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Re: Making sense of it all...

Postby lttutrow » Sun Nov 28, 2010 12:10 am

Dr. Menezes is in DesMoines, Iowa. Did they do a brain and full spine MRI or just spine? My kids have a 504, and the things in it are mostly related to what needs to be changed or accommodated for in their environments. Things like an unlimited bathroom pass and clinic, no dodgeball/contact sports in gym or recess, ability to have someone else write for them if needed due to hand weakness, etc... We met with the teachers, clinic staff, and principal at the school and then the Dr. just had to fill out and sign a simple form.
I'm so sorry you all are dealing with this!!! Only one of my two has a Syrinx, and his was from c3-t5, 5mm wide at t4-t5. His decompression surgery for his Chiari made it collapse in the cervical spine, now it is 4mm wide at t4-t5. Please let me know if there is anything I can help answer.
Praying,
Lori
lttutrow
 
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