We just got the MRI results and the doc says He has Chiari 1 malformation. 8mm? we had an MRI as he has had a couple really weird passing out episodes that can last any where from 10mins to an hour and hes completely unresponsive, no real seizure activity so doctors couldn't figure out what was happening. He is adopted and doctors have been thinking he has fetal alcohol syndrome and a learning disability..... my research tonight suggests that some of his issues may be due to this new diagnoses. He has 10 birth siblings all of which have neurological issues....now im going to contact there adoptive families and let them know about my sons diagnoses and that it may be genetic. Im from Canada, Ontario any one else from Canada and know of doctors that know alot about this? He is most likely going to need surgery......ug......he doesn't struggle with pain...only the odd head echs that aren't even very bad. After reading others stories I feel were very lucky......well blessed I should say.
Hoping to find others who have the passing out episods like my son.....also others from Ontario, Canada
I can suggest additional testing for ur DS....this is to see how his chiari is affecting his overall health....a CINE MRI to see if he has a CSF obstruction, and u also want MRI's of the thoracic and lumbar MRI as there r related issues like a syrinx and tethered cord and disk issues that can add to this condition,
With children it is important to also do a sleep study to rule out sleep apnea.....
Many with Chiari do have drop attacks but I have not heard of neone's lasting as long as ur sons have....so I really do not know what to tell u there, but it is possible for some sort of seizure activity as some have been dx'd....but u said that was ruled out....
U will also want a true Chiari specialist....we have a list for Canada and yes there r a few members from there...and here is a link to the list ...the list i snot a referral just a means for u to start ur research. http://www.medhelp.org/health_pages/list?cid=186
Know that u r not alone, there are other parents going thru the same issues u r and I am sure u can help each other.....let us know how we can help.
I am not a parent of one with chiari. I am soo sorry to hear about your dear son. I to had bouts of passing out, not any longer than seconds tho. Like selma said above, your best bet is to seek out a chiari specialist. Some may travel for a good ns. I live in michigan and my ns is in colorado. Its hard with travel expenses, but I wouldn't trust another. You need to seek out a few opinions....good luck and I'm so sorry again...hugs,,Dana
So sorry that you had to find out you have a son with Chairi, but do know getting the dx'd is a blessing because now you can move on from here and get second oppopions. I sugest starting a journal with all you information in it encluding his test results of his MRI, CTS. or any other studies he will be having. This helps when going to 2nd or even 3rd oppion. I actually went to 3 before finding one I was satsisfied with. Wishing you and your son the best. I'm thankful that you found this site because wee are all here to help and support in your journey. Please know your not alone. You are a good momma trying to get some answers for him. My heart goes out to you and the journey that you are going through. Lettin you know I am here anytime you need anything. Best wishes.
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