Hello again. I have the sister w/Downs. She is 54 yrs. I have been told that these "spells" she is having are probably TIA's. Here is what happenes. She tries to walk, but her legs just shuffle, then slow way down, then she says she is dizzy. These only last about 3 minutes, then she is different for a few hours afterward. She may be confused, she will talk to me about things I have no idea of. Or she may see people who are not here(mostly she thinks my kids are here when they aren't). Or she may sit and stare alot, or sleep for a few hours. But after that, she is fine. From what I have read, we are blessed, as I hear some are not able to walk for awhile. Anyway, can anyone describe these to me? Give me some kind of insite into these? I want to understand what she is going through, so I will know how better to help her. But she is not about to relate these things to me. Any help, even minor, will be of big benifit to me, for her. THANK YOU ALL
       Sincerely MJS

I think that your sister's symptoms are related with complex partial seizure(including partial status epilepticus) not TIAs....I am not an neurologist but you shoud ask the neurologist about if those symptoms are seizure related....
I hope it could be an help.

Jin-Il.

hi mjs,
my name is jessica.my brother is 24 years old and has downs syndrome.he had his first surgery on april 30th and goes for his second on aug. 13th.i know exactly what you mean when you say that at times you dont know what your sister is feeling.it is the same with my brother.from what i know,he hasnt had trouble walking,but he has told us he's dizzy.when was your sister diagnosed with moyamoya?

:)Thank you for the replys. To the first: her nueros didn't even ask to see her again. I asked them, and they said there was nothing they could do anyway. She was sent to a hospital out of our area, and her doctor just got her records here. So I will have have a personal meeting w/ him next week. They cannot do anything for her, and I get that. But I feel they just dumped me.  To reply #2,,,, she has severe Downs, is 54 yrs, was diagonsed March of this year. I would LOVE to hear from you. I am her sole caretaker, for the last 14 yrs. Raised my kids with her, and now the grandkids. Maybe we can compare things and it would help. Again,,, thank you very much from both! And I will ask about the seizure thing.     Sincerely MJS

hi mjs
sorry it took so long to reply,i hope everything is going well with your sister.She is very lucky to have you to take care of her.what is her name?where are you from?

;) First off: thanks to the person who gave  me the complex partial seizure. I looked it up, and realized that she has been having these. But just a few days ago she had a for sure TIA. Then today I think she "threw" a blood clot. So, now I know, and am learning, what the differences are with these things. I also discuss them with the nurse who comes out to the house, and she agrees with it also.
My sisters name is Bonnie. Actually, Bonite. which means beautiful in spanish( I am told). We live in Indiana, just outside of Indianapolis. Since she had her episode today, she has been pale, slow, and confused. I don't know how long they can go without another serious problem. I have no idea if there is any kind of time frame. I have a consult with her doctor this Friday. I will be interested to see what he has to say. Will let you all know. SIncerely MJS

MJS,
        Good Luck on Friday.

>:(   Well, I went to her doctor Friday. That was a waste of time!! He refuses to discuss any problems she may be having. He did agree it may be a good idea to put her on an anti sezure med,,, but even then,,, he put someone elses name on it! I was never so upset and furious with a doctor! I have NEVER seen this kind of behaviour in a doctor. He acts as if he is complete denial! Kinda wierd, isn't it? Then, I forgot to ask him about her ultra sound of her kidneys,etc. So, Monday morning I called, left a message wanting to know if anything showed on her tests. The nurse called me back later and said : Doctor wanted to let you know he would not change her course of treatment.      OK<<<<< uh>>>>> does that mean they found something? She says,, well I can't tell you that.  After some discussoin,, I told her to go back and ASK him,, if they found anything on the tests. I have heard nothing! So,, as of this next Friday,, I am trying anouther doctor. I hate to change docs at this time,, but I guess I have no choice. I have had nothing but problems since she was told she has MM. He refuses to discuss the MM or what could happen. Can't have that. SO,,, will let you all know what goes on. PS<<< she has not been doing well. Barely walking, eyes are not even,  speech leeps slurring, and seems "Lost" alot. Anyway, until later            Sincerely MJS

YOUR NOT ALONE I HAD THAT PROBLEM WHEN I WAS FIRST DIAGNOSED WITH MOYAMOYA. THE DOCTORS IN HERSHEY WAS GIVING ME RUN AROUNDS BUT DONT GIVE UP ITS MORE WOTH IT TO FIND ANOTHER DOCTOR LIKE I DID.

i think that you must immediatly get an appointment with another dr if you have problems contact an advocacy organization for retarded citizens did you contact any of the drs on this web site maybe one of them can help but it sounds like time is of the essence it sounds like bonnie really doesnt feel well keep us posted god bless you for being the wonderful sister that you are
                                              donna