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kim h
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I Love MM.com!

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new to this
Jun 11th, 2011 at 6:49am
 
i just wanted to say hi to start with. my daughter Louise how is 15 years old and has been given another thing to the long list of her problems moya moya with a twist Huh. she also has Down Syndrome, autism, adhd, ocd, odd, female problem's (and no it's because she's female as some males think Grin) and a few other thing's. so MM is another is some more letter's after her name. so as i have said to all her doc. and therapaths she's got more letter's after her name than they have got put together (it's close)

since late Jan this year (on my b/day 25th) it has been a whirlwind. starting with a lung problem (still debating) hosp 6 day's come home, yeah back to school after 3 more days rest!! WRONG, out shopping, left arm don't work Roll Eyes bugger maybe muscle, pinched nerve, normal stuff, OK see doc next day, no not that, off we go to the john! (john hunter hospital). doc said with her history it will be ok in the morning if not come back, ok I'll be back at 9am (10/2/11) after 3 hour's of nothing, demanded new doctor. ok 2 hours later our dr gobie & almost dr lang arive. ok admit her for mri under a anistedic asap (next day friday 11/2/11 3.40pm) should be about 20min all good. 1h 20min later, mayhem Shocked. get back to ward ECG, doppler, ultrasound, move room's twice to behind nurse's station ok it's now 8pm. news had stroke, not normal one!! bugger. next day 10am "is ok to go for a walk Louise wheel chair me walk, all good" had a great time blow dry hair watching the helicopter land and take off, see the birds and flowers, had hot chocolate, talk to her best mate Nickie on mum's mobile, back to ward. 20 min later "i fell sick " another stroke 12noon. we all watched as the doc's and nurse's scrambled over 3 hours as her face on the left go into full drop and almost back again!

as of the 11/6/11 Louise is still none the wiser. i talked to the to her dr gobie, dr chamberlin, dr marie, and nurse janis with discustion with 35 other doctors, and after 4 months on 8/6/11 that was it MM with a twist!!!  now it starts

8 strokes later (TIA"S), 3 nero doc's, black listed from old ped's doc, find new ped's doc, no help from therapist (ADHC), for 15year's and as my GP said "now we have so many doctor's looking after her that he has to start file 5 just with the reports and don't trip over the ream's of fax's for her as you walk out the door" Wink

i would like to thank DJ for starting this web sight, i don't feel so lost now. and i've found the other's with this in australia that "can be counted on one hand!!!!" thank you so, so much DJ, from a mum that has a daughter with MM in australia, best wish now and always

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hrsridermom
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mother of 19 yr old daughter
with MMD

Posts: 292
Tampa, USA, FL, Florida
Gender: female
Re: new to this
Reply #1 - Jun 11th, 2011 at 9:05am
 
My word Kim, you sure have a lot on your plate.  Now that you have the diagnosis what do the doctors suggest you do about the MM?  Is surgery in the plans?  I'm glad you found DJ's site.  When my daughter was diagnosed the doctor said "look it up on Google".  Thankfully I found this site since the doc couldn't tell me much.
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Destin's mom
 
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kim h
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I Love MM.com!

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Re: new to this
Reply #2 - Jun 12th, 2011 at 6:36am
 
we are planing in the next 2 weeks i told the doctor's i need to have the 20th of this month to close our school's p&c Roll Eyes after that all good. the dr can do the first op straight after the angiogram it's up to me how quick, i want asap with all the dr's consulted. Undecided.

i've been very lucky Louise has lots and lots of doctor looking after her especially our Dr Gopinath Subramanian (Dr Gopie) and all the other's

now the cotton wool is of a little (thank dr gobie it was him) louise is getting back to school and as of this week 2 half days and 2 full days with a rest day in the middle on the wed.  yahoo!!!!! Grin  (we finshed school here in dec 17 2010 for mian holiday's). and best of all we are back to respite for 2 day's at a time. my frist one will be in mid aug. so she has to be better for that (it will be the first time in 9months a day and night to myself)

i would like to thank you for reply, i didn't think any one would. i thought after i wrote i shouldn't have put in that spot, and hoped no one would get to upset, i'm still learning.

best wishes kim and louise
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hrsridermom
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mother of 19 yr old daughter
with MMD

Posts: 292
Tampa, USA, FL, Florida
Gender: female
Re: new to this
Reply #3 - Jun 13th, 2011 at 8:50pm
 
Sounds like things are happening quickly.  Glad you found a doctor you like. 
I find that going to the forum topics under Moyamoya related topics gets more responses.  You will also find the most information there.  People post quite a bit and I have learned a great deal there.  Just keep checking in and let us all know how things are going.
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Destin's mom
 
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