New episode - another MRI/MRA

Yes, it has been quite awhile since I posted about Grace. She did well this past summer with only 1 episode of the stroke like symptoms she experienced in the past. This happened in early August and lasted about 30 minutes. Her Tegretol was increased after that. On New Year’s Eve day, she developed a headache above left eye, then in the evening she started with the right sided numbness/weakness followed by left side of mouth drooping with slurred speech. This episode lasted 1 hour. She got extremely tired and fell asleep, which was too bad because she was so excited to stay up to watch the New Year’s Eve ball drop in NYC. Her neurologist ordered blood work which she had done this past Thursday- no results yet. As I type this, she is having another MRI/MRA. She is also scheduled for an EEG on Wednesday. Everything will be sent to Dr Rossenwasser to review. How to explain to a 7 year old - “Why is this happening to me - it is ruining my life”. “What if I don’t wake up after the MRI?” Grace has such grown up questions. She even promised not to have any more seizure activity if we cancelled her MRI/MRA, which I feel indicates that she feels it is her fault that she is going through all this. - Thanks for listening - Cindy

Hi Cindy...I've been thinking and praying for Grace! I cannot even think how scary it is for her to have MRI's or EEG's. Stay strong, little Grace!

Thank you for your words- she did well with the procedure today - came home very tired, but did not take long to get back to her fun personality. Few days until we get results. Thanks again - Cindy Hope you have a good, healthy New Year!

I am so sorry to hear about the new symptoms Grace has had. We are praying for a good outcome from the tests.

Can we send Grace a free "Brainbow?" Check us out at Facebook.com/lindseysbrainbows and message me your address if you think she would like one. We love giving them to other kids who are fighting AVMs!

Thanks Susan, I sent you an email about the Brainbows - Grace's EEG is tomorrow and she is more accepting of that procedure than the MRA. Hoping all the results don't take long to get back to us - Cindy

Grace's labs came back pretty good. Her tegretol level was in the middle of the normal limits, but her neuro suggested to increase her pm dose by 50 mg and I don't understand why, so I told my daughter she should ask for the reasoning on that decision. Grace's Vit D was low at 20. Her EEG was normal and her MRA remains consistent - no growth - thank God.

Susan and Lindsey, Grace just loves her new brainbows. They are so cute. We got them in the mail on Saturday and she wore one to school on Monday, a different one on Tuesday and she picked out which one she wants to wear on Wednesday and Thursday! Grace has been doing well since her New Years Eve episode. The only thing new is that she has experienced a few frontal headaches - not severe, and only lasting a short time, but something she has not experienced before New Years Eve.