DMD Parent Chat

paper (Feb 2, 2010 7:54:42 PM)
(This user has entered DMD Parent Chat)

paper (Feb 2, 2010 7:54:48 PM)
hi anna

anna (Feb 2, 2010 7:54:58 PM)
Hi Paper

anna (Feb 2, 2010 7:55:16 PM)
How are things?

paper (Feb 2, 2010 7:55:31 PM)
ok found out son is a manifesting carrier

anna (Feb 2, 2010 7:55:55 PM)
not sure what that means for CC?

paper (Feb 2, 2010 7:56:22 PM)
he has some of the symptoms but not bad

anna (Feb 2, 2010 7:56:39 PM)
and they won't get worse than they are now?

paper (Feb 2, 2010 7:57:02 PM)
not worse but may get new ones from time to time

anna (Feb 2, 2010 7:57:17 PM)
can he pass it on? so sorry to hear that bad news

paper (Feb 2, 2010 7:57:42 PM)
yes he will pass it on it is a 50% chance to each kid

paper (Feb 2, 2010 7:58:21 PM)
50% chance of each kid to be a carrier or have it

anna (Feb 2, 2010 7:58:23 PM)
so, he will have to have a child "mixed" if he ever wants one so as not to pass it on

paper (Feb 2, 2010 7:58:28 PM)
or be like him

paper (Feb 2, 2010 7:58:49 PM)
you mean test tube

anna (Feb 2, 2010 7:59:16 PM)
no, IVF with cell selection, or maybe just cell selection

anna (Feb 2, 2010 7:59:37 PM)
would have to check with genetic doc for advice on how not to pass it on

paper (Feb 2, 2010 7:59:56 PM)
ya if they cane find our mutation type we have right now they dont know where our familys mutation is they tryed to find it

paper (Feb 2, 2010 8:00:06 PM)
can

anna (Feb 2, 2010 8:00:09 PM)
us carriers can have "normal" kids to end this disease

anna (Feb 2, 2010 8:00:43 PM)
the problem was I didn't know I was a carrier until I had my 2 kids

paper (Feb 2, 2010 8:01:47 PM)
we had genetic test done but where the ccd mutation is normaly isnt where our mutation is

anna (Feb 2, 2010 8:02:20 PM)
I am not sure how it all works, but he should definately seek medical help before he has children

paper (Feb 2, 2010 8:02:20 PM)
it should have been on the RYR1 gene but it wasnt in our family

paper (Feb 2, 2010 8:02:30 PM)
ya i agree

paper (Feb 2, 2010 8:02:44 PM)
maybe by then they will know more about ccd

anna (Feb 2, 2010 8:03:07 PM)
my daughter was planning IVF when she got pregnant so was very frightened. they had a girl, but we don't know if she is a carrier yet

anna (Feb 2, 2010 8:03:22 PM)
she just turned 5

paper (Feb 2, 2010 8:03:32 PM)
they going to test her

anna (Feb 2, 2010 8:03:38 PM)
yes

paper (Feb 2, 2010 8:03:54 PM)
when they going to be able to do that

anna (Feb 2, 2010 8:04:20 PM)
when she is older--maybe 10 or so

paper (Feb 2, 2010 8:04:34 PM)
how by biospy or blood work

anna (Feb 2, 2010 8:04:56 PM)
or if they need to draw blood for something else before then

paper (Feb 2, 2010 8:05:22 PM)
oh ok

anna (Feb 2, 2010 8:05:32 PM)
not sure which method will be used, and there is really no hurry. she would probably kick anyone with a needle at this age since she bit the dentist

paper (Feb 2, 2010 8:06:04 PM)
i sat down in my layzyboy today and it broke in to 4 pieces the dumb thing has been fixed before i guess it was its time to go lol

paper (Feb 2, 2010 8:06:16 PM)
lol

anna (Feb 2, 2010 8:06:21 PM)
oh no--bombed out of your chair

paper (Feb 2, 2010 8:06:38 PM)
yep now ihave to sit on the hated sofa

anna (Feb 2, 2010 8:06:41 PM)
we had 2 tires destruct on our trip home yesterday

paper (Feb 2, 2010 8:07:04 PM)
oh no didnt you just buy them

anna (Feb 2, 2010 8:07:13 PM)
the steel belt on one went and we put on the spare--25 miles from home the second one snapped

anna (Feb 2, 2010 8:07:31 PM)
no, these were our studded tires--not the 4 new ones

paper (Feb 2, 2010 8:07:42 PM)
still sucks

anna (Feb 2, 2010 8:08:06 PM)
it was scarey to have them snap at 70 mph

paper (Feb 2, 2010 8:08:18 PM)
ya been there

anna (Feb 2, 2010 8:08:20 PM)
but God was looking out for us

paper (Feb 2, 2010 8:08:30 PM)
i hate when tires pop

anna (Feb 2, 2010 8:08:44 PM)
hubby went down to discuss matter with Firestone a few minutes ago

anna (Feb 2, 2010 8:09:33 PM)
some Firestone tires were recalled around 2001--and we just found out these were made in 1997

paper (Feb 2, 2010 8:09:34 PM)
we had a big van years ago one them turtle tops and i had one blow on highway and i crashed it couldnt stop

paper (Feb 2, 2010 8:09:47 PM)
could be them

anna (Feb 2, 2010 8:10:40 PM)
no, when a tire blows that is it--these tires sorta snapped and then car could be controlled to a stop alongside the hiway

paper (Feb 2, 2010 8:10:56 PM)
that was good

anna (Feb 2, 2010 8:11:19 PM)
when the second one went we were only 2 miles from a tire place, so they stuck on a used tire just to get us home

anna (Feb 2, 2010 8:11:32 PM)
then R and I got the new ones put back on today

paper (Feb 2, 2010 8:11:47 PM)
bet r was freaked out also

anna (Feb 2, 2010 8:12:02 PM)
no, he is always calm and collected

paper (Feb 2, 2010 8:12:06 PM)
lol

anna (Feb 2, 2010 8:12:15 PM)
wish his Mom was!

paper (Feb 2, 2010 8:12:35 PM)
lol

anna (Feb 2, 2010 8:13:12 PM)
now R seems to have a fungal infection in a finger so we sent pic of it to his doc and doc says to go to urgent care clinic

paper (Feb 2, 2010 8:13:16 PM)
i have a furry warm body under my lap blanket

anna (Feb 2, 2010 8:13:25 PM)
it is hard to find an UCC around here

paper (Feb 2, 2010 8:13:42 PM)
ya we dont have one them eather

anna (Feb 2, 2010 8:14:08 PM)
so, we are going tomorrow to one the nexst town over

paper (Feb 2, 2010 8:15:01 PM)
i called the kids dr yesterday to get a new script for K's poop med and they called bk and said sure no problem

anna (Feb 2, 2010 8:15:07 PM)
the one our doc told us to go to closed 2 years ago

anna (Feb 2, 2010 8:15:22 PM)
Miralax?

paper (Feb 2, 2010 8:15:27 PM)
i went to get it today and the pharmacy said it was only for a 7 day supply

paper (Feb 2, 2010 8:15:32 PM)
lactulose

anna (Feb 2, 2010 8:15:48 PM)
similar stuff I think?

paper (Feb 2, 2010 8:15:49 PM)
so i got it called their new dr bk and got grief

momma (Feb 2, 2010 8:15:55 PM)
(This user has entered DMD Parent Chat)

paper (Feb 2, 2010 8:16:00 PM)
hi momma

anna (Feb 2, 2010 8:16:01 PM)
Hey Momma

anna (Feb 2, 2010 8:16:11 PM)
Join Paper and me

momma (Feb 2, 2010 8:16:24 PM)
hello

anna (Feb 2, 2010 8:16:38 PM)
How are things there? We each have a little tale of woe we already shared

paper (Feb 2, 2010 8:16:44 PM)
the sec said the dr only called it in as a jester of good relations

momma (Feb 2, 2010 8:16:56 PM)
whats new with the 2 ok here

anna (Feb 2, 2010 8:17:11 PM)
gesture of good relations with you?

anna (Feb 2, 2010 8:17:17 PM)
K ok?

paper (Feb 2, 2010 8:17:18 PM)
i was like what the heck for she is her new pt now and we allways have gotten it a month at a time

paper (Feb 2, 2010 8:17:22 PM)
ya

momma (Feb 2, 2010 8:17:27 PM)
ill have read transcripts

momma (Feb 2, 2010 8:17:32 PM)
good here

paper (Feb 2, 2010 8:17:50 PM)
the sec said that the dr has never gave it to her and that is why

anna (Feb 2, 2010 8:18:03 PM)
we had fun at g'daughter's birthday even tho R had to stay in basement all week-end

paper (Feb 2, 2010 8:18:08 PM)
i was like see here little woman K is her new pt

momma (Feb 2, 2010 8:18:19 PM)
oh glad you had a goodtime anna

anna (Feb 2, 2010 8:18:27 PM)
oh good grief Paper--!

anna (Feb 2, 2010 8:18:33 PM)
doctors!!

paper (Feb 2, 2010 8:18:33 PM)
and she has been on it for 8 years now

paper (Feb 2, 2010 8:18:53 PM)
and her old dr is now dr in china would you like me to call china for a refill

paper (Feb 2, 2010 8:19:00 PM)
and the brat hung up on me

anna (Feb 2, 2010 8:19:24 PM)
Momma--R has a bad fungal infection under one fingernail so we sent pic to doc and he wants us to go to urgent care clinic

paper (Feb 2, 2010 8:19:26 PM)
4 hrs later they called me bk and said the rest of her script was now called in

anna (Feb 2, 2010 8:19:37 PM)
whew!!

anna (Feb 2, 2010 8:19:50 PM)
the Mom usually knows what her child needs

paper (Feb 2, 2010 8:19:55 PM)
good grief why didnt they just call it in

momma (Feb 2, 2010 8:19:57 PM)
really why urgent?

anna (Feb 2, 2010 8:20:04 PM)
Drs need to listen to the Moms

momma (Feb 2, 2010 8:20:17 PM)
for sure !

anna (Feb 2, 2010 8:20:29 PM)
we don't have a regular doc up here and doc thought it looked bad

paper (Feb 2, 2010 8:20:31 PM)
ya for sure i dont want them cutting her open again to disimpact her

momma (Feb 2, 2010 8:21:18 PM)
kents doing better but can eat very little orally not sureif it will get better but happy to be better and still home

anna (Feb 2, 2010 8:21:36 PM)
home is best for sure

momma (Feb 2, 2010 8:22:44 PM)
if we dont have gastric sution while his feed(at night) is on he gets sick

anna (Feb 2, 2010 8:22:47 PM)
and we had 2 studded tires snap their steel belts on way home--and only 1 spare---but it all turned out ok

anna (Feb 2, 2010 8:23:15 PM)
nausea?

paper (Feb 2, 2010 8:23:24 PM)
i want my chair bk or a new chair cause this sofa sucks it is cold over here by this dumb window

momma (Feb 2, 2010 8:23:24 PM)
whew glad to hear you made it home ok

momma (Feb 2, 2010 8:23:40 PM)
yea anna

anna (Feb 2, 2010 8:24:06 PM)
I vote for "slightly used" from Craig's List??

anna (Feb 2, 2010 8:24:31 PM)
maybe one that shoves you up out of it if you need that?

paper (Feb 2, 2010 8:24:37 PM)
ya that would work and i dont care about the color as long as it is comfy

momma (Feb 2, 2010 8:24:59 PM)
i dont always trust craiglist becareful

paper (Feb 2, 2010 8:25:14 PM)
i thought i would end up on the floor lol it just went lol

anna (Feb 2, 2010 8:25:26 PM)
I have a nice chair at our home--here we have folding chairs, canvas sling chairs, and a hospital bed disguised as a sofa

anna (Feb 2, 2010 8:26:12 PM)
Yes, you do have to show caution these days. I got our pedistal oak table off CL for $30

paper (Feb 2, 2010 8:26:18 PM)
oh hey i saw your profile on mymda anna

anna (Feb 2, 2010 8:26:48 PM)
oh--can you send me a little note there?

paper (Feb 2, 2010 8:27:12 PM)
that is a nice porch you and R was on in the profile pic

paper (Feb 2, 2010 8:27:19 PM)
i think i did

anna (Feb 2, 2010 8:27:25 PM)
I never can remember which site has my little slide show--think it is PPMD

paper (Feb 2, 2010 8:27:26 PM)
it is papermom

anna (Feb 2, 2010 8:28:24 PM)
the porch to our apartment--our apartment is on steep hill so we live on second floor which is even with parking. you go across an elevated walkway

paper (Feb 2, 2010 8:28:56 PM)
it is a white painted porch very cute

anna (Feb 2, 2010 8:29:28 PM)
ty--we have a nice apartment with views of lake

anna (Feb 2, 2010 8:30:33 PM)
we were lucky to find a wc accessable one

paper (Feb 2, 2010 8:30:35 PM)
we dont have a porch persay it is more like a covered out reach of the garage

paper (Feb 2, 2010 8:30:50 PM)
ya i bet that is allways hard

paper (Feb 2, 2010 8:31:14 PM)
did u move there cause of R's work

momma (Feb 2, 2010 8:31:23 PM)
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anna (Feb 2, 2010 8:31:24 PM)
I looked a LOT. one woman said her apartments were accessable once you went up 2 steps!

paper (Feb 2, 2010 8:31:32 PM)
lol

anna (Feb 2, 2010 8:31:53 PM)
yes, we moved here just for R to work at Microsoft

paper (Feb 2, 2010 8:32:07 PM)
must have been hard

anna (Feb 2, 2010 8:32:30 PM)
well, now my hubby works up here too, so we are all together

paper (Feb 2, 2010 8:32:50 PM)
u going to stay there

anna (Feb 2, 2010 8:33:26 PM)
R and I are going "home" soon for a few days. well, houses near Seattle are way more expensive than our hometown so I don't think we could buy here

paper (Feb 2, 2010 8:34:00 PM)
must be hard keeping 2 houses up

anna (Feb 2, 2010 8:34:08 PM)
I'm not sure how long R will be able to work

anna (Feb 2, 2010 8:34:47 PM)
yes, under hubby's care our home is deteriorating fast and needs a new roof too

paper (Feb 2, 2010 8:35:10 PM)
eek that will cost

anna (Feb 2, 2010 8:35:51 PM)
plus, our hometown is very damp and everything gets moldy--it is much drier up here. and we don't have to do upkeep on apartment, just tell manager what is wrong and it will be fixed

anna (Feb 2, 2010 8:36:40 PM)
so, no telling what we will do. our hometown is very damaged by economy and who could buy our home there?

paper (Feb 2, 2010 8:36:51 PM)
well anna it was nice talking to you but my legs are going numb sitting here i think ill go to bed

paper (Feb 2, 2010 8:36:58 PM)
ya like here to

anna (Feb 2, 2010 8:37:00 PM)
ok paper, tc

paper (Feb 2, 2010 8:37:09 PM)
night

paper (Feb 2, 2010 8:37:12 PM)
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anna (Feb 2, 2010 8:37:12 PM)
Night

anna (Feb 2, 2010 8:37:30 PM)
Night Momma--ttyl

anna (Feb 2, 2010 8:38:25 PM)
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