Around 4pm yesterday Jaxson was in the crawling position and his head was probably about 3 to 4inches off of the carpet. His arm gave out and he bumped his head. He started to cry the loudest I ever heard for a few seconds. I sat him up, he looked at me wierd, inhaled and what seemed to be holding his breath for a second and stopped. His started staring, had no movement in his face, eyes, or body. Just staring. His pupils stayed large and his head started to move in circles and his legs and arm went completely limp. It lasted about 2 to 3 minutes and then he came out of it and was looking around and acting very confused.
I dont' know if it was him passing out from holding his breath or of he had a seizure. This has never happened before. His Pediatrician said it could have been either or but he didn't witness it so he doesn't know. Dr.Spetzler said it is highly unlikely related to Jaxson's AVF. Any thoughts?
I believe Dr. Spetzler and what he says goes, but, with my Spinal AVM at C-3 thru C-6, I began to lose function in one leg and had limited function in my left arm. The AVM had started growing and pushing my Spinal Cord out of the way and this took 50 years to get this way. I believe Jaxson losing control of his arm and legs is an affect of the AVF, however, for them to do the Angio and treat, his little veins need to be bigger or they risk puncturing a vein which would be way worse then sealing off the AVF. Hope this helps, I completely understand what you are going thru.
I think yesterday's incident was possibly related to his AVF, but am not for certain. Maybe he passed out from holding his breath...I'm not sure. For now I'm just monitoring his behaviors. So far today is like any other day :) Every docotr says the same...that his veins needs to be bigger. Since Jaxson is showing no symptoms, Spetzler would rather wait. I side with that rather than rushing into it. Dr.Edwards has not mentioned anything about anything really, just that he needs to do an Angio and wants to when he's a year old. My gut tells me that the lack of information, no answers and rushing to do the Angio when Jaxson is doing well, wouldn't be for Jaxson's best interest. Thank you for your input, I appreciate it. How are you doing as of late?
Spetzler is the smartest man I know. Do not do the Angio at 1 yesr, they diD the scan and they can see the avm. When I saw how carefully they had to wind thru my veins to get to the AVM and seal it off (took 3 tries)then I realized how important it was. My AVM did not show signs until I was 12 years old. We did not know what was wrong so Jaxson does have time. I have gone from only being able to move my mouth after surgery to now driving a car. I continue to get better every day, it has been 30 months. I am better than before surgery.
We are most comfortable with Dr.Spetzler so our plan is to seek treatment from him. We are waiting like Dr.Spetzler advised as well. There are many smart and talented Neurologist out there, I think it all depends on what kind of care the patient needs. It is releiving to hear that so many like you are better after there AVM procedure/s. It's good news! :)
I know that had to be very scary for you! I will keep little Jaxson in our prayers!!
Thank you Christie! :) Every bit helps. Pediatrician and Neurologist thinks it was a breath holding spell. It hasn't happened again so I'm relieved. How are you and your family doing?