new mom to diagnosis

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

Moderator: pmaxwell

new mom to diagnosis

Postby neshoba » Tue Jan 29, 2008 10:14 am

My son, age 5, has been diagnosed with cerebellar ectopia (7mm). He also has had a diagnosis of sensory integration dysfunction, speech and developmental delays since 13 months old and the doctor highly suspects a higher functioning form of autism (such as Aspergers) and the Pediatrician is begining to think the autism may be in a different category, such as autistic savant, due to his memorization skills. He has just started having seizures and was taken in for an MRI last year. We were looking for the location of the seizure pattern and found something else, the cerebellar ectopia. He is now waiting for a referral to go through to consult with a neurosurgeon. I have read up on some of the condition on the internet and the treatments sound horrific. What am I to expect exactly of this situation? Has anyone been in this same circumstance that can shed some light??? In advance, I sincerely thank anyone who can educate me a little more on the matter.
neshoba
 
Posts: 4
Joined: Tue Jan 29, 2008 9:41 am

Postby lalaswihart » Wed Jan 30, 2008 12:06 am

I am sorry you had to seek us out, your son sound very much like mine.
I posted a note about what we just found out about my son but if you want you can email me and we can share what we have been through. My son is 6. feel free to contact me at charlies_lady@yahoo.com if you want.
take care and God bless i will be praying for you.
Laurie
Laurie
Tx mom of 4 beautiful little ones
8yr old CM1/SM/TC/EDS,
6yr old twins CM1/ TC both possible EDS
4yr old CM1/TC

"For nothing is impossible with God." Luke 1:37
lalaswihart
 
Posts: 61
Joined: Wed May 23, 2007 12:32 pm

Postby neshoba » Wed Jan 30, 2008 7:12 pm

My mistake! :shock: My son is 6 too. Guess this was a hard year this past year. It seemed to go on forever. He turned 6 in Sept. We have dealt with what was already diagnosed, autistic spectrum, speech and developmental delays and sensory integration dysfunction. This last year we were introduced to seizures as well. This poor child just never seems to be relieved and the wierd thing is, he lives his life as if he doesn't even notice anything being wrong. He has his moments (bad days), but every child does. For the most part, is so happy, yet prefers to be alone at the same time. I would be more than happy to share our experiences with you if it helps. Right now we are newly approaching this cerebellar ectopia, but I am doing my best to learn. Thank you for your prayers and support!
neshoba
 
Posts: 4
Joined: Tue Jan 29, 2008 9:41 am

Postby lalaswihart » Wed Jan 30, 2008 7:27 pm

Ok he is just like my son...They think most of his issues are the CM1 and Tethercord and flatten puituitary gland. I hope you find all info you can and that God leads you in the right direction and all i can say is pick the best Chiari dr and not the best neuro surg.

Here is a link to TCI they have great video's.
www.northshorelij.com/body.cfm?ID=6407

also please feel free to contact me, God Bless :)
Laurie
Tx mom of 4 beautiful little ones
8yr old CM1/SM/TC/EDS,
6yr old twins CM1/ TC both possible EDS
4yr old CM1/TC

"For nothing is impossible with God." Luke 1:37
lalaswihart
 
Posts: 61
Joined: Wed May 23, 2007 12:32 pm


Return to Pediatrics

Who is online

Users browsing this forum: No registered users and 6 guests

cron