Hi, everyone, has been a while since i have been online, and i really need all the advice and help you can give me at the moment........after a relatively good few months, Mitchell has had three big t.i.a.'s in less than a week.....The one he had on Saturday was that bad, i was terrified he was having a stroke.....He had another one today, and took him to the hospita........Neither one of his neurologists were there, and the registrar sent us home, even though he was still unable to walk..

What do i do?....i am so scared, he has never ever had so many tia's so close together, this is like my worst nightmare starting all over again, and Mitchell is so scared about whats happening to his body....how do you explain to a 4yr pld why he cant walk or move his left arm?

Please reply, would appreciate any input at all
god bless and take care
kalise

Hi Kalise!

So sorry to hear that your son and you are going through this nightmare again. Like you we live in a country that has very little knowledge and experience of moyamoya but my advice to you is to go to the hospital with your son and demand the doctors to help him, no matter what it takes! If necessary they must look for information and guidance abroad or elsewhere to be able to help him!  Be a tiger for your son!!!!!
I so much wish I could be there to support you, I think I know what you´re going trough.
Good luck and I´ll be thinking of you 

Take care

Annica

Hi Kalise -

I'm so sorry Mitchell and your family are going through this again.  I agree with everyone - demand that the hospital contact your neuro right away.  Take Dr. Steinberg's and Dr. Scott's phone numbers with you - ask your neuro to call them.  Do what ever you can do for your child.  Good luck and please keep us informed.

-Shari

Thankyou so much for all of your prayers, advice and support...

When at the hospital, i did demand to speak to either one of Mitchells neurologists, but no one would listen, which is quite ironic considering, it was one of his neurologists i spoke to on the phone, and was him who told me 2 take Mitchell straight in there.......once there, i was told both neuros were away and could not be contacted...

Mitchells movement started to improve slitely when we were in emergency, at which point the registrar asked me if i thought Mitchell was..."putting it on"......can any of you even believe that...theres a four yr old boy sitting there terrified and they basically accused him of faking it, and me of being a hypocondriact mum......i did also tell them i was not comfortable taking Mitchell home, and i was told there were no beds available, so i didnt have a choice...

I informed them, that if i took Mitchell home and he had a stroke, hemmorage etc,....there would be hell to pay...they told me that was unlikely......i told them...unlikely?....like when he was 15 months old and you told me the fit he had was nothing, yet a week later hes back in here after a major stroke...

in the end they wrote something down in a red file...i wonder if thats the "problem parents" file....

Mitchell seems a lot better today, and i have spoken to the neuro secretary that said, he is on the urgent list for an mri..

once again thankyou for everything, i cant tell you how much it helps talking to people who really do understand
will keep you posted
god bless and take care
Kalise

Hi Kalise!

We haven´t heard from you in a while and I hope everything is fine with Mitchell, you and your family.  In your last post you were talking about the red file perhaps being the "problem parents" file and it really made me smile because I know for sure I´m in it at Louise´s hospital and I´m proud of it! I beleive that is the only way to deal with your child having this disease. No one knows about it and and you really have to fight to get the right treatment for your child.
Let us know how Mitchell is and be sure we are thinking of you and your family!

Take care

Annica

Hi Kalise!

Checking out the board daily and i have been wondering how Mitchell is doing????
Sure hope that the doctors listened and gave him the help you and your family needed. also hope that your silence is due to a nice, long vacation!? 

If you can find the time, give us a word on how you´re doing.

Love,
Annica

GO RED FILE PARENTS I don't have any children, but I'm sure if I was going through what you are with my son, I would be at the top of the "red file" stack!! You just do ehat you gotta do to get your son what he needs and don't even give it a second thought. GO GIRL, give'em you know what! Best wishes for you and your son. Keep us posted             Nikki

PatM

You are amazing - a few days out of a very rough surgery and encouraging other mmers.  Bless you

Janice