09.22.2005
08:45 PM - 11:15 PM EDT
PARENTchat / DMDParentChat

marty5 -- {welcome marty5}
anna -- {welcome anna}
anna -- Hi Marty
marty5 -- Hi anna sorry I keep missing the wed chat.
anna -- It's ok. I just couldn't stay long last night
marty5 -- I am enjoying work. the time just flys by and seeing people every hour makes the day go by fast.
anna -- That is what I like about work too
anna -- I cannot work very often since I have Roy
marty5 -- I am home by my self tonight hub
marty5 -- working
marty5 -- We went and did the telothon and a bike ride last week end for Tom
anna -- It is fun to be with the "grown-up" docs and nurses--is like a reality show somewhat. You never know what's going to happen next in a CCU.
anna -- I am happy you are still so active in MD things.
marty5 -- That is ok that you can't work often. just enjoy the time you have with Roy
anna -- I do
anna -- We are going to Seattle area to see my mom tomorrow.
marty5 -- I wnat to keep md a part of my life.
jayk -- {welcome jayk}
marty5 -- Hi Jayk how are you doing tonigh
anna -- Roy and I want to move but my hubby doesn't......Hi Jayk
marty5 -- Where do you want to move to.
jayk -- Hi, ok
anna -- Marty, did you see that CIncy came last time?
jayk -- u?
anna -- Nearer Seattle, but not in it.
anna -- Jayk, what are you up to these days?
marty5 -- No I didn't see that remind me about cindy
marty5 -- How far are you now from Seattle
jayk -- Not much
anna -- Cincy recently lost her 22 y/o son to dmd. I wanted to get you in contact with her.
anna -- About 130 miles away from Seattle now.
marty5 -- I hope shee comes tonight.
marty5 -- Roy would have more chances to do things if he was closer when the boys are older I think you need to be by a large city
anna -- If Roy decides to go to grad school we would have to be in same town as my grand daughter.
anna -- There was stuff to do everyday on campus.
marty5 -- that would be nice for you
marty5 -- school is the best thing for our boys. It keep them around others
rayla -- {welcome rayla}
rayla -- {welcome rayla}
anna -- It is just so far away. It was 200 miles to where we went to college, my daughter lives 150 mile further away.
anna -- Hi Rayla
rayla -- Hi
anna -- Jayk, do you want to continue in school?
anna -- Rayla, is your son doing better?
jayk -- No, I decided not to
anna -- I hope you still get out and go Jayk.
rayla -- No, anna he is just not himself.
jayk -- Sometimes
anna -- Some of our boys have such a hard time emotionally coming to terms with their dmd
rayla -- Sometimes I don't think I will ever get through this.
anna -- I know Rayla, but you will. You HAVE NO CHOICE. But us moms are strong enough.
ken-t -- {welcome ken-t}
anna -- Hi Ken. I am Royla's mom. He was at a play last night.
rayla -- Hi, ken-t
ken-t -- proud to hear that and thank you for letting me join
jayk -- Hi
anna -- Best advice for Rayla Marty?
rayla -- I wish I could be like you,anna you seem so strong.
ken-t -- and it is a pleasure to meet you anna...i believe royla has been in my chat
ken-t -- and hello to any i missed
anna -- I am weather-beaten and hardened to DMD Rayla. But I swear I cried for 2 years straight when we found out our son had dmd.
marty5 -- we just do what has to be done and keep going. no one knows what we have in store with or without DMD
anna -- Roy enjoys your chats Ken.
ken-t -- i appreciate him and his spirit, he has such a great one
marty5 -- I think it was harder on me when we found out we were to live with DMD again. I know tom is free from DMD now and it makes me happy knowing the hurt is gone
ken-t -- ho is roy doing anna?
ken-t -- how is
anna -- Roy has a great sense of hunor, just like you do Ken. He is doing fine, but needs to find something intellectual to do. We are looking into volunteer opportunities.
anna -- Humor
ken-t -- that is great, i know i'd go bonkers if i diod not get out of the house, which is really tough at times...
ken-t -- but giving back to others is a great way to stay active
anna -- Right. We cannot go and help the hurricane victims, but we can help other people closer to home.
ken-t -- so true...and as long as he does not wear himself out to bad he will do good
anna -- Rayla, how do you think you can help your son? Can we help? My son never wanted to talk about dmd, but getting him buddies who also have it has been so valuable.
marty5 -- My son loved going to camp and keeped in touch with all the kids who helpped at camp.
rayla -- It's hard for me anna because my son doesn't talk and I don't know his feelings.
anna -- My son has dmd friends 50 miles up the road. We will go visit them next week. They also went to camp with him.
jayk -- {goodbye jayk}
rayla -- I know he is aware that something is wrong.
anna -- My son never talked about it with me--but finally he stopped covering my mouth and would listen.
anna -- Rayla, could he go to camp? That is where many boys learn how to deal. My son will talk with his dmd friends.
anna -- Rayla, they soon look up dmd on their computers--so it is better they learn a bit from you first.
rayla -- I have explained to him that his muscles are weak. He doesn't have a full concept of DMD.
ken-t -- it has been a pleasure talking to everyone...but i must go
ken-t -- take care...and hope to talk you all again
anna -- Bye Ken!
rayla -- It's hard for me to talk about.
ken-t -- {goodbye ken-t}
rayla -- bye, ken-t
marty5 -- It takes time to come to grips about DMD
momma -- {welcome momma}
anna -- Hi Momma.
rayla -- I wish we didn't have to deal with this.
momma -- hello
rayla -- Hi, momma
anna -- Rayla, it is hard to talk about without crying. That is why our boys need friends going thru the same things--they learn by observation and the mom doesn't have to say as much.
momma -- how is everyone it kinda stormy here!
anna -- Watching Galveston/Huston prepare for Rita on tv.
rayla -- I cry everyday, anna I wish I could get over this and be more help to my son.
anna -- You will, because you have to. He will take cues from how you act. And you will never get over it, but learn to cope with one thing and one day at a time.
rayla -- I think our boys deal with it better than we do.
anna -- I think so too Rayla.
marty5 -- I think that too. We always think of the things that they won't be able to do and The boys don't even know they just live with what they can do
momma -- time will make day to day eaiser i think about things evryday but try not to dwell on things or i would be depressed!
anna -- Who needs "reality shows"?? Reality of life with dmd or other hurricanes is enough reality.
chance -- {welcome chance}
anna -- A lot of us need to use some anti-depressants at first. They helped me get over the hump of depression and sadness.
anna -- Hi Chance
rayla -- Hi, chance
rayla -- I hate to admit I used alcohol to cope at first.
rayla -- But thank the lord I am over that.
anna -- So many do Rayla, but soon realize that this is not helpful to their child. The "mama bear" in us tells us we have to keep all our sensibilities to do the best for our child.
marty5 -- well you all take care and I will chat with you soon
anna -- Bye Marty. Have a good week.
marty5 -- {goodbye marty5}
rayla -- You are exactly right,anna.
chance -- {goodbye chance}
klerissa -- {welcome klerissa}
rayla -- Your son is so lucky tgo have a mother like you,anna.
anna -- Rayla, I feel bad for you. I was there and you think you will never adjust. But you do, and you will want to fight for your son.
rayla -- to have a mother like you, sorry
anna -- Thanks Rayla--don't think I know all the answers! Hi Klerissa.
rayla -- Hi, klerissa
momma -- anna i'm having trouble remember were you the one i was tell about kent having blood drawn for a liver fucntion?
klerissa -- hi there
anna -- Yes, we talked about it with Rayla.
anna -- What did you both find out?
anna -- Klerissa, are you a dmd mom?
klerissa -- no i am not
momma -- it came back good now he's just has to do the scope.
anna -- And I looked up glucose levels with Prednisone too--they will be elevated.
klerissa -- but i have a few friends with md
momma -- ty
anna -- Klerissa, you are welcome anyway. What is yor interest in MD if I may ask?
anna -- What kind of Md do they have Klereissa?
klerissa -- I have a few friends with opmd
anna -- Momma, I know so many dmd boys with stomach upsets and so on.
anna -- I am not familiar with opmd.
klerissa -- ocular pharyngeal muscular dystrophy
momma -- i thought about cancelling he doing so well i hate to put him through it
anna -- Definition — One of nine types of muscular dystrophy, a group of genetic, degenerative diseases primarily affecting voluntary muscles. Cause — A faulty gene for poly(A)-binding protein 1 (PABPN1), which is suspected to lead to production of extra chemical material that causes formation of clumps in the muscle cells. Onset — Usually not until the 40s or 50s. Symptoms — OPMD first causes weakness of the muscles of the eyelids and throat; weakness of facial and limb muscles often occurs later. Swallowing problems and difficulty keeping the eyes open are common problems. Progression — Slo
klerissa -- yes..thats it
anna -- I know I would be torn Momma--I think he will be mostly asleep and not remembere it.
anna -- Learn something new everyday--I am so directed to dmd and FA that I forget there are over 40 different MDs.
klerissa -- fa?
momma -- i hope anna
anna -- Friedreich's Ataxia. A friend has it.
klerissa -- oh yes..i have heard of that as well
anna -- Older dmd boys seem to have early morning stomach upsets and lots of gas from using a bi or v pap all night.
anna -- My son aspirates when he tried to burp the gas out.
momma -- kent troubles go for about a weeek he can't eat then he goood for a month or so then it starts in again
momma -- ????????????????????
klerissa -- thats not good
anna -- Can you coordinate this with anything Momma? Maybe you rarely eat a certain food?
anna -- ??? about aspiration??
klerissa -- yes..dosent her run in complications with aspirating
rayla -- Good-night, hope to talk to you all later.
momma -- not really sometime i wonder if his bladder meds do something to his stomach i ask dr he said he doubts it
klerissa -- nite rayla
sunney -- {welcome sunney}
rayla -- {goodbye rayla}
anna -- Whenever my son aspirates I know I have to get the material out of lhis lungs and that an hour will be shot doing it.
sunney -- Good evening all
klerissa -- hi sunney
anna -- Hi Sunney
momma -- hi sunney
sunney -- hi anna - nice to see you again momma
anna -- Care to tell us some about you Sunney? I am mom to a 24 y/o with dmd.
sunney -- and hi to you also klerissa
klerissa -- =)
momma -- same here sunney
sunney -- anna I am mom to 19 year old with dmd and have been reading the transcripts for this sight for about a year
anna -- Well, then you are a friend already!
sunney -- i met momma last night right after you left - very briefly until we got the boot
sunney -- i feel like i know a lot more about you all than you do about me! ;)
anna -- Glad you finally got to come in and chat. Oh yes, the boot hits us all....
anna -- Well then, tell us about you and your son.
sunney -- thanks anna and congrats on you and your sons graduations!
sunney -- Nick is 19, doesn't use any breathing assistance but has lots of issues with aspiration and gastric problems
anna -- Thank you Sunney.
sunney -- he was intibated in march for 19 days but has since been, as he says, "hanging in there"
anna -- OK, we need to confab on those issues then. How do you handle them?
klerissa -- nite everyone,,,be safe
sunney -- good night klerissa, take care
momma -- night klerissa
anna -- Sunney, have you read doctorbach.com site about respiratory issues?
sunney -- anna he usually vomits at night and I basically tip him off the edge of his bed and try and drain everything out, and pray...
anna -- My son takes Prilossec for acid reflux twice a day, and 2 Tums the moment he wakes up.
sunney -- i have read some, need to read more but we are between a rock and a hard placed. Nick is also developmentally delayed and has so much stress when it comes to medical stuff
momma -- kent takes previcade
sunney -- we've done several different meds but the vomiting continues. they scoped him and he has a peristalic proximal bowel. He now has j tube but still vomits stomach bile
anna -- For aspiration we use coughing techniques with either his vpap, NIV, or Cough Assist machine. THen postural drainage and chest percussion.(clapping)
sunney -- have either of your son ever gotten aspiration pneumonia?
anna -- Nick might need to start getting familiar with the Cough Assist before he needs it. What do his drs say about the vomiting? I am so afraid of aspiration with vomitting.
anna -- No, my son has never had pneumonia because I get that aspirated stuff out immediately.
sunney -- they think it is a combination of the slow emptying and also possibly some endocrine issues, his sugards and potassium swing all over the place
anna -- Anyone tried Gas-X?
sunney -- when nick got the pneumonia we had no indication he'd aspirated, no cough, no nothing, just all of a sudden he started breathing funny
anna -- Sunney, sounds like your son has more problems to deal with than I do.
momma -- kent doesn't vomit when he came home from camp sick he had dry heaves i think it would of been easier if he threw up
sunney -- he sees dr.'s that are very dmd familiar and they shake their heads
anna -- It is obvious when my son aspirates--he wheezes and rattles.
sunney -- yuck momma, that must have been so hard on his body!
sunney -- i've been reading your posts to noels mom and was so glad to see you told her to take noel to the hospital - it's amazing how fast they can crash
sunney -- i've been reading your posts to noels mom and was so glad to see you told her to take noel to the hospital - it's amazing how fast they can crash
momma -- it wore him out!
sunney -- does kent vomit much momma
anna -- Dry heaves hurt, but at least there is no fluid to be aspirated. It is easier to have something to vomit for most of us tho.
sunney -- yep, i'm just glad i have a tough stomach with all the vomit in this hos
momma -- not at all
anna -- Yes, Noel needed to be hospitalized immediately.
sunney -- house even
sunney -- when i took nick to the hospital his sats were at 95%, that evening he went from 95% to 45% in about 5 minutes - thank god I was right there
anna -- It is always my fear that ER docs don't know what to do for dmd.
sunney -- yeah - we end up telling them what to do
anna -- We have an oximeter, but in case of emergency my son's pulmonologist is over 2 hours away.
sunney -- we have a family dr. right here but he only handles little stuff, for the big stuff we go to ucdavis, about 45 minutes away
momma -- we tried to get ox but ins denied
momma -- same here sunney
sunney -- same here momma, said an over night pulse ox was fine so no need
anna -- Sometimes intubtion is the only way, but I am terified of it happening to my son even tho I work in a CCU and have seen lots of patients intubated.
jn -- {welcome jn}
momma -- our specialist are an hr away
anna -- Hi JN
sunney -- it is something i don't want to see again any time soon
sunney -- good even jn
momma -- are the ox expensive?
sunney -- i've looked on ebay, anywhere from $100 or so on up
jn -- hi, there I am a first timer.
anna -- Sorry, I have to go for a few and get dinner in oven. brb and will catch up. Medicaid bought our pulse ox so I don't know the cost.
momma -- hi jn
sunney -- enjoy your dinner anna, it was nice meeting you
jn -- is this a group of people who already know each other?
sunney -- glad you could join us jn
sunney -- i just met momma last night and anna tonight jn
momma -- might have to check ebay
sunney -- yeah momma, they have all kinds of them out there
sunney -- jn, i have a 19 year old son with dmd, how about you?
jn -- I am trying to find advice for my 6-yr old son whose leg seems weak.
sunney -- have you had him to the dr. jn?
sunney -- momma - my husband loves ebay, maybe he could find a good deal!
jn -- not yet, as I thought the ped. dr is not for this kind of issues.
sunney -- i have some used medical equipment in my garage that i need to donate
momma -- i bought dvd on ebay kent loves home alone so i bought the hole set
sunney -- nick loves movies also, our new deal is everytime he gets an IV he gets a movies - last week cost me 4 movies!
jn -- I am concerned when I watch him playing soccer, he is slow and weak, he falls a lot, etc.
sunney -- jn is there a history of md in y
sunney -- family
sunney -- darn laptop enters on its own before i'm done typing
jn -- no, I am quite atheletic, but couldn't understand why he has weak legs.
sunney -- jn, i would voice your concerns to his pediatrician and see what he says
anna -- Hi JN. Did any doctor mention MD to you? It could be so many things. Does he have a positive Gowers?
sunney -- wb anna, that was a quick dinner!
jn -- ok then, I will talk to the dr. 1st. Are there specialists for kids with issues like him?
anna -- I was just putting it into the oven.
sunney -- y
sunney -- you'll be eating late anna
anna -- Yes JN, but our pediatrition did not discover our son had dmd.
jn -- I don't know his Gowers. I found MDA on the internet while I was looking for info.
anna -- My hubby just gets home from work about now.
sunney -- my son was diagnosed at 5 when he went in to have his tonsils out and had a malignant hyperthermia episode on the table - still has his tonsils to this day
anna -- Gowers is how they get up from the floor--sort of climbing up their legs with their hands.
sunney -- sorry all, hubby wants to watch survivor so i have to run. i enjoyed meeting you all
anna -- Come again Sunney!
sunney -- thanks anna - i will! it's tough finding moms of older boys
jn -- I need to write down all these - they are new to me.
sunney -- goodnight!
momma -- kent had a simailar happening sunney he was having club foot surgery and had a full blown mh episode
sunney -- {goodbye sunney}
anna -- JN, your doc can refer you to a children's clinic if he/she suspects MD.
anna -- JN, can you son climb stairs? Can he get up after he falls easily?
jn -- thx, anna & sunney.
jn -- He can climb up stairs, he gets up slow after falls.
anna -- JN, I pray it is not MD. Please come back and tell us what the doctors said. They all told us our son was just too short to climb stairs!
jn -- I will let u all know. Thx. Bye.
anna -- He could be diagnosed with a blood test if it is MD.
jn -- Got it.
jn -- Got to go. Have a good evening.
jn -- {goodbye jn}
anna -- OK, now I have to go make the gravy. Hubby is home. Chat with you all later.
momma -- well im gonna go to anna ttyl
anna -- Night Momma!
anna -- {goodbye anna}
momma -- {goodbye momma}