03.10.2005
09:45 PM - 12:15 AM EDT
PARENTchat / DMDParentChat

marty5 -- {welcome marty5}
matts-mom2002 -- {welcome matts-mom2002}
marty5 -- Hi how are you and matt doing?
amarilis -- {welcome amarilis}
amarilis -- hello
amarilis -- {goodbye amarilis}
jayk -- {welcome jayk}
eg -- {welcome eg}
jayk -- Hi
eg -- hi jayk how are you?
jayk -- Pretty good
jayk -- You?
eg -- we are good here also
jayk -- Cool
eg -- brb sorry
jayk -- No problem
matts-mom2002 -- {welcome matts-mom2002}
matts-mom2002 -- Hello everyone
matts-mom2002 -- Marty if you are still hear we are doing fine to answer your question
matts-mom2002 -- OK BYE ALL seems like everyone is out chat later
jayk -- Hi
matts-mom2002 -- {goodbye matts-mom2002}
jayk -- How ru
raybear -- {welcome raybear}
jayk -- Hi
eg -- back
eg -- hi raybear
raybear -- hi jayk how r u?
jayk -- Kewl
eg -- geeze brb again
marty5 -- Hi eg and jayk and raybear
jayk -- pretty good
jayk -- Hi
raybear -- anything new?
jayk -- Not really
jayk -- You?
marty5 -- I need some ideas. our Libary just gat a laptop and want to get a table for chair or a table for wheelchair users to use in Toms name any idea?
raybear -- nothing much here
eg -- ok I am back well see for how long LOL
eg -- hi marty
jayk -- Lol
raybear -- not right off marty, I'll look for something I thought might be cool but not sure where link is
eg -- hmm marty I am not very good with words
marty5 -- I understand what you mean
eg -- are we all doubletasking? LOL
raybear -- at least double eg LOL
eg -- triple?
raybear -- uh something like that LOL
jayk -- {goodbye jayk}
raybear -- trying to get dinner, make coffee, on phone, looking at tables and here
eg -- oh raybear maybe more?
eg -- wow
eg -- wb jayk
eg -- I need to do something
eg -- so brb
raybear -- k
eg -- back
eg -- marty you still here?
raybear -- sorta
raybear -- let me finish something 9in kitchen
eg -- ok
raybear -- ok, done
eg -- I am on the phone
raybear -- LOL guess we are all not very chatty here tonight
eg -- back yea very
eg -- we are chatty on the phone
eg -- well I am not sure what to talk about
mas -- {welcome mas}
eg -- hi mas
mas -- hi
raybear -- hi mas
mas -- hows everyone tonight
eg -- pretty good
raybear -- ok here mas how r u?
raybear -- do u know someone with MD? I have a 13 yr old with DMD
mas -- hi raybear I'm doing fine and you I have a 15 year old with DMD
eg -- are you new here ma?
raybear -- how is he doing?
eg -- I also have a 13 yr old with dmd
mas -- yes i'm new how are your children doing
raybear -- welcome, these chats are great support
raybear -- my son is happy and well. wc full time for about 3 or so years , otherwise ok
mas -- he's been in hospital since Feb.6 had to have a trach putin last week doing better now should be back home next week
raybear -- sorry to hear that. Glad he will get home soon
eg -- my son has been in a wc for 5 yrs
eg -- did he go in with respiratory problems?
raybear -- that is long time in hospital, poor guy
mas -- got a cold couldn't cough up flem then had respiratory problems but better now
eg -- my nephew has been in hosp since feb 18 got pnemonia and also could not get secretions out
eg -- he got his trac yesterday he is 16 yrs old
drake -- {welcome drake}
mas -- thats a long time also is he doing better
raybear -- hello drake
drake -- hello everyone
mas -- hi drake
eg -- yes he is doing much better drs found some pulmo edema in his lungs not too much
eg -- Hi drake
mas -- whats pulmo edema
raybear -- drake, I was reading transcripts and noticed a discussion on alternatives..like Royal jelly and all
drake -- hi eg
eg -- fluid in the lungs
mas -- ok
drake -- Whats that about
eg -- drs also said he was very clogged with mucus
raybear -- wasn't it you who was discussing stuff with someone with LGMD?
mas -- I've was reading about royal jelly too
drake -- He was talking about honey and thyme
raybear -- ahh, well I do know Royal Jelly isn't what it is cracked up to be and doesn't do anything for DMD, and I doubt seriously honey or thyme does either
mas -- mine ended with a blocked airway from secretions
raybear -- I believe DMD Pioneers site is compiling a list of supposeded "cures" that are not worth a dime and that is listed
drake -- yeah I more interested in the gene therapy
drake -- Have you checked the DMD pioneers chat ?
raybear -- maybe gene therapy will find a cure but I doubt it will be within the next ten years.
drake -- I plan check it out next Wednesday
raybear -- Wednesdays I work so don't do chats but they also have a website
eg -- did the drs try bi pap mas?
drake -- Lets try to be more positive raybear
mas -- eg he has bi pap at night will go home with vent/bi pap machine
eg -- my nephew did but the problem was still secretion removal
raybear -- just what I have researched, not trying to be negative but I've been looking at gene therapy for ten years already and they frankly are not a whole lot farther along in my humble opinion
raybear -- reality is all....just the reality
drake -- What do you think of stem cells?
eg -- I guess gene therapy has been talked about quite a bit the fact still remains that it does not work but maybe some day they can work the kinks out
mas -- my son ended up being intibated 2 days after he ended up in the hospital. after 1 wk they took off an ended back on
eg -- that is what happened with my nephew he was intubated twice
raybear -- about the same drake, honestly
raybear -- personally I am disappointed there is not more funding looking at potential drug therapies for the kids of today
mas -- did they try to unhook and let him breath by himself they did that for mine and he could only breath twice before they had to put vent back on
eg -- it is difficult when we are told another 5 yrs another 10 for cure
raybear -- see, I look at mas son and eg's nephew and at 15 and 16 now have trachs....that should not be and gene therapy is primarily looking at children under ten
eg -- yes they did mas
raybear -- maybe something will come together in the gene thearapy area and I do hope so but I am not holding my breathe either, especially since all literature says 5 to 10 years and my son will be to old for trials most likely
drake -- I'm not sure i believe in drug therapy because of all the side effects!
eg -- and every year our sons and other turn another year old
mas -- is he doing better with secretions mine seems to have good days and bad
raybear -- ugly disease. Parent Project has good information on drug and gene therapy, also practical things such as wc fittings and PT
mas -- I was told if you try trials you can not try more
eg -- well he had alot of stuff coming out right after trac even when he coughed up came out of his mouth
raybear -- gene therapy will not be without risks either
mas -- whats parent project
eg -- mas my sister has two other children with dmd with trac they are 21 and 19 yrs old
raybear -- mas, I think you are right. a family I know tried the myoblast transfer and he is not able to do another trial yet
mas -- mine was like that did they change it yet my sons was changed today and he got sick from it.
eg -- and when they first got their trac they were suctioned frequently now it is not much as all unless they are sick
raybear -- Parent Project also does research for Duchenne but only focuses on Duchenne.
raybear -- http://www.parentprojectmd.org/news/latest/index.html
eg -- they changed his inner cannuel?
mas -- eg how are your sisters children doing at that age
drake -- This may be a touchy subject but have any of you sat your boys down and explained to them what is happening? if so, how did they handle it?
eg -- they are doing well all three had back surgery and now tracs
eg -- its canuela
mas -- no the how thing change cannuel every day and clean area he also has a feeding tube
eg -- I think
raybear -- FFF is another group trying to fund drug research in Brazil through AAMD...they also have info on vitamins and alternatives http://groups.msn.com/FightforaFuture
eg -- my sisters 19 yrs old has a feeding tube and so does my son
mas -- yes i have he has anxiety attacks so i have to be real careful how to talk to him and we have a therapist that helps out he gets scared easy
eg -- my son knows cause he had watched his nephews he seems to be doing ok with it
raybear -- drake, what do you mean? My son at 6 knew he had muscle weakness because he had Duchenne MD. He did not need more info. We explain it like sex...as he asks we tell what he needs to know, he does not hear death or age issues...like late teens
eg -- he also knows that my brother died from dmd
raybear -- fact, dmd boys are living longer fact, no one knows when they are going to die
mas -- my oldest has a hard time with his brother but all my boys now what will happen and we try not to talk about death either cause it upsets everyonw
eg -- we don't discuss it much either cause we know when God says its time then its time
raybear -- thankfully we have not had to cross that area...yet
drake -- all this info is good and makes sense and i thank you all
mas -- thats true. just hard
eg -- yes still hard no matter what
mas -- brb my son calls
raybear -- but my son is aware that some boys get trachs, some we know have died in the last year, I dont think he has made a personal association yet
eg -- k
drake -- I'm sure your son knows kids talk the info is there .
raybear -- drake, do go to the link for Parent Project, knows as PPMD. They have a great message board too that talks about all those issues, when to tell, what to say etc :0)
drake -- thank you I will be cheaking it out
eg -- sure drake
raybear -- yeah, i suspect he may know, but we answer honestly that no one knows when they will die. Our neuro and ped who treats the cancer kids here believes that is an appropriate answer
raybear -- i chat with someone who is 36 with DMD. Ya really can't tell. And some had trachs early as well
drake -- I wonder what they do different on so on.
drake -- sorry my typing really sucks
raybear -- what I read from dmd pioneers the most they did diff is reject a drs prognosis and keep fighting I guess.
raybear -- dmd varies child to child
drake -- Thats is so great
raybear -- everyone asks that drake! LOL did ya eat more vitamins? what did you do so you beat the odds??
raybear -- its a good question, wish someone knew the answer
eg -- dmd does vary quite a bit
raybear -- here is a good list to join! http://health.groups.yahoo.com/group/dmdsupport/
drake -- {goodbye drake}
raybear -- i hear they are trying a drug trial for sma in England, that is exciting, maybe open up for all the mds if it works...for more drug research
eg -- mas are you still here?
mas -- yeah i'm back
raybear -- welcome back (wb) mas
raybear -- hope I did not upset Drake. I know her son is only 3 but she has a brother who died from DMD
mas -- i did a pen pal that has dmd and he was a sports coach in high school and didn't get dmd until late teens
eg -- usually dmd is noticed at 3 yrs old have not heard of someone late teens being diagnosed