3 yr old granddaughter just diagnosed

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

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3 yr old granddaughter just diagnosed

Postby Naniof1 » Tue Jul 31, 2007 11:35 pm

My son and his daughter live with us. When she was 14 mos old she was diagnosed with Transverse Myelitis and spent 3 months in Children's Hospital of Oakland. Since then she has recovered the ability to walk (not a normal gait) and is happy and healthy. Her MRI at that time showed Chiari I malformation, which they pretty much dismissed as not important Recently she experienced some leg pain and increased spasticity over a weekend and we took her back to Shriner's Hospital where she is currently being seen. They ordered another MRI of her head and spine. We just got the results and it confirmed the Chiari I malformation and a large syrinx from C2 through at least T8 with abnormal T2 signal extending inferiorly to the level of at least T11. It measures 9mm at maximum diameter.
This is totally unexpected. We have not talked to a NL yet, her appt is next week. We had kind of gotten used to dealing with the TM and her disabilities, and now are trying to wrap our minds around a whole new set of problems.
Any recommendations for a great pediatric neuro in CA? Preferably northern CA?
Thanks a lot.
Naniof1
 

UCLA

Postby Sara » Wed Aug 01, 2007 7:20 am

UCLA is suppose to have great ns. Dr. Jorge Lazareth is well known there. he has spoken at an ASAP conference also.
Sara
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Postby angie7 » Wed Aug 01, 2007 9:32 pm

First I want to say that I am so sorry to hear of your granddaughter. I can only imagine the feelings that all of you must be feeling right now. You are all in my thoughts...

On the home page of ASAP you will find a medical advisory board. They will have a long list of specialists, listing them by state.

I do hope that you seek out a specialist. They are the best when dealing with these rare conditions. Dont let anyone dismiss her Chiari or her SM. It is serious and needs someone who knows what they are doing to take a look at her. I wish you all the best and please, keep us posted on her. It is never easy seeing such a young child dealing with this.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Grandaughter diagnosed

Postby chiarimom » Mon Aug 06, 2007 4:29 pm

First I want to say that you are all in our thoughts and prayers.
We have a daughter that has SM/CM and some of the other connected disorders. It can be vey overwhelming but just as you learned about TM take CM/SM one step at a time.

Do they think the syrinx came from the TM? I was wondering as my sister is a principal here in NJ and had a 7th grader get diagnosed with TM just this past Spring. He unfortunately is completely wheelchair bound with very limited use of his hands --- no trach so that is a good thing. I was just wondering if that could be a cause of SM.
Sara's recommendation of Dr. Lazareth is the only one in CA that I can think of. Remember that you can always use Angel Flight should you decide to seek care out of the CA area.

Know that you can come here anytime to seek information and support. If there are any specific questions I can answer you can get in touch with me and I would be more than happy to help you out.
Faith
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