Hi all,

I will meet with Leonie's Doctor on 8 November, which is 6 weeks later since Leonie was diagnosed with Moya Moya.

Since Leonie was discharged from Hospital on 24 Sep, Leonie is keeping taking medicine and the appointment of 8 Nov. is sort of first appointment regarding Leonie's treatment plan.

I got millions of concerns as parents actually do, however, I have no idea what are the most concerns should I bring to Dr, on our first appointment ,which can get answer back from Dr. directly.

May I ask ( sorry for my really stupid questions) : when you come to see Dr. discussing treatment plan, what did you concern most? What did you ask? :-[

Thank you

Helen

sorry for the backup information I missed out : Leonie was in hospital from 20 Sep to 24 Sep because of her strokes and did not have any treatment since then except taking medicine. Leonie did twice MRI and once EGG up to now, and we were not told any results from MRI scan. I am thinking we may be told the scan results on our first appointment on 8 Nov.

Hey Helen

From now until the appointment I'm sure you will have plenty of questions pop into your head. I suggest you write them down and take them with.

Who is the doctor you're seeing on the 8th? Is it a neurologist or neuro-surgeon?

Some suggestion:

1. Is the moyamoya uni-lateral or bi-lateral? Uni-lateral means Leonie has moyamoya on one side of her brain, bi-lateral means she has it on both sides.

2. Has he/she seen many other moyamoya cases?

3. what surgical procedure does he/she suggest?

I'll try to add to this list as the week unfolds.

Take care and stay strong
Mark (Luca's Dad)

DJ has a thread “Diagnostic process and questions for surgeons” incase that may be of help:

http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1086889571

Mar

Hi Mark and Mar,
Leonie will see her pediatric neurologist on the 8 Nov.
That's a really good thread actually you guys replied me regarding the questions I need bring to Dr. Thanks for that.
Now I am collecting and puting them in writing and also doing around anesthesia research and may bring some questions regarding it as well.

Hi Helen,

Just wanted to say that I'll be thinking of you & Leonie tomorrow (actually I think it's already tomorrow for you since I'm in the U.S.)  I hope that you will have a helpful meeting with the doctor and that you get the answers you are seeking for little Leonie.

Best,

Jenn

Hi Jenn and others:

Thank you for your kind thoughts.

Yes, I just came back from meeting with Leonie's appointment. It was a helpful meeting. Leonie's neurologist doctor has referral ed Leonie to a neurosurgeon,who got a high reputation in neurosurgery area. Leonie will be seen soon.

Actually, during the meeting, her pediatric neurologist doctor asked our advice for choice because in his point of view: doing something and doing nothing both have risks under Leonie's circumstance with Moyamoya two sides of brain blocked already and neurofibromatosis type 1 diagnosed. I made decision for Leonie having surgery instead of keeping medicine for life and seeing how is going.
I am not sure yet whether I made a right decision or not but I am quite clear in my heart that is what I want for my baby. I know there is a long and tough way ahead and I have to make decision before the condition getting worse and worse.

Thank you again. I'll keep you guys updated.

I'll be thinking of you and your family.

Helen

Hi Mark and Mar,

The questions  you guys provided are really good.

Leonie's doctor was so surprised that I could raised them when he asked me any questions during the meeting.  ;)

Thank you so much for your great help.

Helen

It's a great pleasure.

All we can do is make decisions based on our knowledge and insight into our personal situations. If only we had a crystal ball!

I don't doubt you made the right decision for Leonie.

Stay Strong
Mark (Luca's Dad)